- September 24th, 2007: New Vice President Joins Arbor Research
- June 13, 2007: New Executive Director Joins Arbor Research
- July 5,2006: URREA Becomes Arbor Research Collaborative for Health
- June 13, 2006: The Dialysis Outcomes and Practice Patterns Study (DOPPS) at the ERA-EDTA Congress
- April 12, 2006: CMS Awards Contract for Chronic Kidney Failure Research to URREA
- October 11, 2005: CMS Awards Contract for Multiple Research Studies to URREA
- September 23, 2005: Scientific Registry of Transplant Recipients Awarded to URREA
- March 17, 2005: Annual HRSA Transplant Data Report Released
- November 5, 2004: URREA to Embark on New Analysis of Quality Incentive Payments for CMS
- October 29, 2004: Drs. Held, Port, and Wolfe Honored for Contribution to Care for Patients with Renal Disorders
- July 7, 2004: NKF and URREA Partner to Improve Outcomes for Hemodialysis Patients
- May 14, 2004: SRTR Report on the State of Transplantation Published in the American Journal of Transplantation
- February 16, 2004: Annual HRSA Transplant Data Report Released
- February 5, 2004: Changing Priority for HLA Matching Could Reduce Racial Inequities in Organ Allocation
- January 28, 2004: Study Estimates the Number of Life Years That May Be Gained When Hemodialysis Practice Guidelines Are Followed
- November 14, 2003: New Data Demonstrate Improving Care for Dialysis Patients Could Extend Survival
- October 21, 2003: CMS-Funded Research Will Assess Effectiveness of ESRD Disease Management Models
- January 14, 2003: National Registry Provides Comprehensive Look at Organ Transplants
- January 7, 2002: National Registry Provides Comprehensive Look at Organ Transplants
- September 28, 2000: URREA Awarded SRTR
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September 24th, 2007: New Vice President Joins Arbor Research
Bruce M. Robinson, MD, MS, has joined the Arbor Research Collaborative for Health as the Vice President of Research.
His responsibilities at Arbor Research include providing scientific leadership in the conduct of research,
translating research into clinical practice or policy, and collaborating with stakeholders and researchers.
“Dr. Robinson’s past research and specialized expertise fits extremely well with our investigations into improving
practices for better patient care and outcomes,” said Dr. Friedrich Port, President of Arbor Research.
Dr. Robinson received his MD from the University of Michigan in 1994. He received postgraduate training
in nephrology and completed a Master of Science degree in Clinical Epidemiology at the University of Pennsylvania School of Medicine.
While at Penn, Dr. Robinson received highly competitive funding awards from the National Institutes of Health,
including an Individual National Research Fellowship Award and Mentored Patient-Oriented Research Career Development Awards.
From 2005 to 2007, Dr. Robinson was an Associate Director at a major pharmaceutical company, where he focused on the
development of novel therapies for hypertension. Dr. Robinson’s past research has also included successful collaborations
with Arbor Research on DOPPS studies, studies of cardiovascular risk factors in patients with chronic kidney disease,
and studies applying novel analytic techniques to observational analyses.
“For many years now, Arbor Research has provided research on clinical practices and patient outcomes that
is unmatched in quality, scope, and influence,” said Dr. Robinson. “I have great respect for the organization
and its dynamic staff, and for all they’ve accomplished for the betterment of patients’ lives. I’m honored to be
a new member of the Arbor Research team, and committed to our pursuit of novel, scientifically rigorous research
that will make a difference for patients in the United States and around the world.”
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June 13, 2007: New Executive Director Joins Arbor Research
The Arbor Research Collaborative for Health is pleased to announce that Bobette A.
Schrandt has joined the organization as Executive Director.
Ms. Schrandt brings to Arbor Research more than 20 years of experience in public health and social work administration.
Most recently she served as the Vice President of Programs and Quality Improvement at Easter Seals, a network of centers that provide services to people with disabilities and their families. She has also taught at Eastern Michigan’s Graduate School of Social Work and is a Licensed Master Social Worker.
“I have great admiration for Arbor Research’s commitment to improve patient lives by improving the
practice of health care on an empirical basis,” said Ms. Schrandt. “The organization’s mission,
philosophy, and values are inspiring to me both personally and professionally. I look forward to
working with our President, Board of Directors, and our extremely talented staff to strengthen our collaboration
with partners around the world and advance the goals of Arbor Research.”
Ms. Schrandt will serve as the full-time senior administrative manager for Arbor Research,
and will plan the administrative and operational activities with broad authority to make commitments
for the organization. Her experience in securing funding and working with public agencies will be a great asset to Arbor Research.
As Executive Director, Ms. Schrandt will ensure the smooth operation of the organization as it continues to grow in size and in its scope of research.
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July 5, 2006: URREA Becomes Arbor Research Collaborative for Health
The University Renal Research and Education Association is changing its name to
Arbor Research Collaborative for Health, effective Wednesday, July 5. The name
change reflects the organization’s expanding presence in the field of
evidence-based medical research.
The nonprofit research group, formerly known
as URREA, remains based in Ann Arbor, Mich., where it works to improve patient
care and inform public policy. Founded in 1996, Arbor Research conducts studies
in epidemiology and public health based on its collection and management of large
datasets from the United States and abroad.
The group’s initial research focused
on outcomes for hemodialysis patients but has since grown in scope to include
end-stage organ failure and chronic disease. Under the continued leadership of
Friedrich K. Port, MD, its current contracts include the international Dialysis
Outcomes and Practice Patterns Study (DOPPS), the U.S. Scientific Registry of
Transplant Recipients (SRTR), and numerous studies for the Centers for Medicare
and Medicaid Services. Areas of expertise include biostatistical analysis,
clinical practice, management and integration of large datasets, economics,
and public policy.
“The new name is a more accurate reflection of the breadth of
our research endeavors,” said Debbie Vandermade, Arbor Research operations manager.
“It’s the same great team of highly qualified researchers working on an increasingly
diversified range of projects. We’re telling everyone: ‘Same excellence. New name.”
The company’s Web address is changing to www.ArborResearch.org. The address and phone number
remain the same: 315 W. Huron Street, Suite 360, Ann Arbor, Mich., 48103; (734) 665-4108.
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June 13, 2006: The Dialysis Outcomes and Practice Patterns Study (DOPPS) at the ERA-EDTA Congress
The Dialysis Outcomes and Practice Patterns Study (DOPPS) is pleased to continue its collaborative presence at the ERA-EDTA Congress.
Many past and present officers of the ERA-EDTA have contributed to the design and research of DOPPS, including Francesco Locatelli (Immediate Past President of EDTA), Norbert Lameire, Carmine Zoccali, Vittorio Andreucci, Luis Piera, Severin Ringoir, and Fernando Valderrabano. The ERA-EDTA’s peer-reviewed journal, Nephrology Dialysis Transplantation, has been an important means of communicating international findings from the DOPPS; since 2001, seven DOPPS papers have been published in NDT, and two more are in press.
This year marks the eighth ERA-EDTA Congress at which DOPPS findings have been presented. This year five abstracts are being presented, including one (JM Albert et al) that was honored as one of the eight best abstracts submitted this year. Additionally, DOPPS investigators are participating in two symposia: “News from Observational Studies: DOPPS and COSMOS” (chaired by Drs. Cannata-Andía and Port, Sunday July 16, 15.45, Clyde Auditorium) and “How to Design a Clinical Trial” (Dr. Port and Dr. Christoph Wanner, Monday July 17, 10.30, Boisdale Hall).
An International Study With Relevance for European Practice
The Dialysis Outcomes and Practice Patterns Study (DOPPS) is a prospective study based on the collection of observational, longitudinal data for a random sample of hemodialysis patients from a representative sample of over 300 dialysis facilities internationally. Twenty facilities from each of seven European countries participate in the study. These 140 centers deserve much credit for their diligent and timely data collection effort, which makes this study so successful.
DOPPS I (1996 - 2001) included seven countries: France, Germany, Italy, Japan, Spain, the United Kingdom, and the United States. DOPPS II (2002 - 2004) and DOPPS III (2005 - 2007) include twelve countries: Australia, Belgium, Canada, France, Germany, Italy, Japan, New Zealand, Spain, Sweden, the United Kingdom, and the United States.
DOPPS Country Investigators provide country-specific guidance for DOPPS researchers and data collectors; they also assist in facility recruitment, review and localize study questionnaires, and offer insight into local ESRD issues. The Investigators for the European countries of the DOPPS are: Michel Jadoul, MD and Norbert H. Lameire, MD (Belgium); Bernard Canaud, MD and Christian Combe, MD (France); Jürgen Bommer, MD and Volker Wizemann, MD (Germany); Vittorio Andreucci, MD and Francesco Locatelli, MD (Italy); José Miguel Cruz, MD and Luis Piera, MD (Spain); Stefan Jacobson, MD and Björn Wikström, MD (Sweden) Roger Greenwood, MSc, MD, FRCP and Hugh C. Rayner, MD, FRCP (United Kingdom). These investigators and other European colleagues have published over 40 papers on DOPPS data.
The DOPPS is supported by scientific grants from Amgen and Kirin without restrictions on publications. The DOPPS is coordinated by the Arbor Research Collaborative for Health (formerly URREA) in Ann Arbor, Michigan, USA.
For more information about DOPPS, including publications, abstracts, and downloadable public-use slides on mortality, hospitalization, vascular access, and quality of life, please visit the DOPPS booth (Booth 68b, Hall 4 of the SECC) or website (www.dopps.org).
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April 12, 2006: CMS Awards Contract for Chronic Kidney Failure Research to URREA
Ann Arbor, MI — The University Renal Research and Education Association (URREA), in collaboration with the University of Michigan’s Kidney Epidemiology and Cost Center (KECC), has been awarded a new contract for technical support and research related to end-stage renal disease (ESRD). The Centers for Medicare and Medicaid Services (CMS), which awarded the contract, serves as a national health insurance program for people with ESRD, and conducts numerous programs to assess and improve the quality of patient care.
In this new contract, URREA and KECC will continue some tasks that they have previously performed for CMS, as well as several new tasks examining dialysis practice across the country:
- Gathering and computing ESRD quality measures and disseminating them to the public.
- Maintaining a comprehensive database of patient- and provider-level ESRD data from virtually all of the relevant CMS data sources.
- Validating the reliability of the measures collected by the Clinical Performance Measures (CPMs) and producing an annual CPM report.
- Producing the Dialysis Facility Reports, which present many of the ESRD quality measures at the facility level, and reporting on selected measures to the CMS Dialysis Facility Compare website.
- Computing the quality measures on CMS’s Dialysis Facility Compare website. URREA and KECC will provide statistical and technical support for this website, which provides detailed information on dialysis and chronic kidney disease to patients and families.
- Providing support for the systematic revision of existing measures and the development of new measures, through extensive literature review and organizing technical expert panels (TEPs).
This project extends URREA’s and KECC’s considerable experience in applying clinical, statistical, and technical expertise to the study and care of people with chronic kidney failure.
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October 11, 2005: CMS Awards Contract for Multiple Research Studies to URREA
Ann Arbor, MI — The University Renal Research and Education Association (URREA) has been awarded a new contract that will allow it to bid on research studies for the Centers for Medicare and Medicaid Services (CMS). This five-year Multiple Research and Demonstration contract (MRAD) makes URREA one of 10 exclusive bidders on high-priority CMS research studies and demonstrations related to improving health care in the United States. These studies will touch on many areas of health care research: cost, access, quality, service delivery models, and financing. All will be undertaken with the ultimate goal of improving health care policy and patient lives.
In preparing for the studies that will arise from this umbrella contract, URREA assembled a team of experts that includes many colleagues from the University of Michigan, particularly in the Kidney Epidemiology and Cost Center and the Schools of Medicine and Public Health. “This contract gives us the chance to bring important Federally-funded studies to Ann Arbor,” said Dr. Friedrich Port, President of URREA and Project Director for URREA’s MRAD team. “We are always excited to collaborate on projects of national importance.”
Under a similar contract with CMS, URREA and University of Michigan researchers have already collaborated on a number of studies, including evaluations of how managed care and disease management approaches fare for patients with end-stage renal disease.
Investigating patient outcomes, costs, and payment structures in the context of health system changes stands at the center of this team’s core research interest and expertise. The research group at URREA and the University of Michigan is pleased to have this opportunity to help improve patient care by building on its experience in health services research and Medicare delivery and payment systems.
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September 23, 2005: Scientific Registry of Transplant Recipients Awarded to URREA
ANN ARBOR, MI (9/23/05): The Health Resources and Services Administration (HRSA) has awarded the University Renal Research and Education Association (URREA) a new contract to continue administering the Scientific Registry of Transplant Recipients (SRTR). The SRTR supports the ongoing evaluation of the scientific and clinical status of solid organ transplantation in the United States. URREA is a not-for-profit health outcomes research group in Ann Arbor, Michigan. As before, URREA will be working in close collaboration with professional colleagues from the University of Michigan on the SRTR. The contract places this Ann Arbor-based group at the forefront of policy analysis and clinical research for patients with end-stage organ failure. The contract runs for three years with options for two more.
The SRTR evaluates a range of issues in transplantation, with implications for clinicians, payers, caregivers, policy makers, researchers, and above all, for patients — transplant candidates, recipients of transplants, organ donors, and their families. Data are maintained and analyzed about all U.S. donors, waiting lists, and transplants, including those for kidney, liver, pancreas, heart, lung, and intestine. By continuing to investigate issues of organ procurement, allocation, and patient well-being, the SRTR will generate information of vital importance to the overall transplant community. Dr. Friedrich K. Port, President of URREA and principal investigator for the SRTR, states, “We are honored by the responsibility entrusted to our dedicated and experienced team, and by the opportunity to improve the lives of patients with advanced organ failure.”
Dr. Port and other URREA staff will maintain their longstanding SRTR collaborations with University of Michigan Medical School faculty colleagues, including Drs. Robert Merion, Akinlolu Ojo, Alan Leichtman, John Magee, and Randall Sung. Dr. Merion, a highly respected transplant surgeon and Clinical Transplant Director for the SRTR, observes that “The development of transplantation policy has always required a careful balance of scientifically validated information and humanistic values. On behalf of all patients who may be affected by our work, we remain 100% committed to conducting scientifically rigorous research of the highest quality.”
Dr. Robert Wolfe, Deputy Project Director of the SRTR, leads a team of analysts on the URREA staff and from the University of Michigan School of Public Health, including faculty members Drs. Jack Kalbfleisch, Susan Murray, Brenda Gillespie, Richard Hirth, and Douglas Schaubel. This statistical team will continue its work in developing new methodology for evaluating outcomes for patients with organ failure. Together, these investigators have a long and well-established reputation for influential work in transplantation, epidemiology, economics, and biostatistics as they relate to patients with end stage organ disease. Dr. Wolfe commented, “It is very rewarding to be able to work with the many professionals who make the life-saving option of transplantation possible. I am proud that our team has been able to contribute to advances in this endeavor. We have recently made great progress in terms of understanding how to get needed organs to those for whom transplantation will be of greatest benefit. This is an effort where science works very effectively, with both patients and health care providers, to make a difference.”
In the past five years, the SRTR has evaluated and helped advance the practice of transplantation in a variety of ways, including:
- state-of-the-art reports for transplant professionals, Congress, other government bodies, and the public
- nearly 50 important publications in major peer-reviewed medical journals, including the New England Journal of Medicine and the American Journal of Transplantation
- presentations at major scientific and regulatory meetings
- allocation simulation models that have helped shape changes in organ allocation policy
- analytical support for the Organ Procurement and Transplantation Network and the HHS Secretary’s Advisory Committee on Transplantation
- dissemination of scientific information about transplantation, including center-specific analyses of outcomes at each of the nation’s transplant centers and organ procurement organizations, available for pubic view at http://www.ustransplant.org/.
- March 17, 2005: Annual HRSA Transplant Data Report Released
Organ Waiting List Grows Faster than Number of Available Organs
Ann Arbor, MI — This week the Health Resources and Services Administration of the US Department of Health and Human Services released its 14th Annual Report on Transplant Data, summarizing official and definitive data on solid organ transplantation in the United States from 1994 to 2003. The new transplant data report provides data vital to the entire transplant community, including patients, medical professionals, and researchers in many fields. It was prepared jointly by the Scientific Registry of Transplant Recipients (SRTR) and the Organ Procurement and Transplantation Network (OPTN).
During 2003, more than 25,000 organs were transplanted in the US -- over 18,000 from deceased donors and almost 7,000 from living donors. During the same period, more than 7,000 patients were reported to have died while waiting for a transplant. The total number of patients awaiting organs reached a new high of 86,355 in 2003. The number of patients awaiting organs continues to grow faster than the number of organs transplanted.
Improved Outcomes for Liver Candidates and Recipients; Increasing Numbers of People With Functioning Grafts
Death rates for patients awaiting livers have decreased considerably in the last 10 years, from 225 to 124 deaths per 1,000 patient years. Death rates following liver transplantation have also shown a declining trend over the decade, dropping from 197 to 156 deaths per 1,000 patient years.
According to a new set of tables included in this year’s report, the number of people living with a functioning allograft has more than doubled over the past decade, rising from 69,354 in 1994 to 153,844 in 2003. While most of these recipients have kidney grafts, the prevalence of those living with functioning grafts has been increasing more quickly for most other organs. Compared with 1994, there were three times as many lung recipients living in 2003, as well as six times as many pancreas recipients and eight times as many intestine recipients.
Changing Sources of Donor Kidneys; Improved Lung Allocation
The use of expanded criteria donor (ECD) kidneys -- those with higher risk of long-term failure due to donor age and medical history -- has continued to grow in response to the shortage of organs. ECD kidneys were used in 16% of kidney transplants in 2003, up from 11% in 1994 and 15% in 2002. The number of donors after cardiac death has also been growing, from 57 in 1994 to 189 in 2002 and 271 in 2003.
A new lung allocation system, approved in June 2004, is expected to maximize the survival benefit of lung transplantation. The new system is not based solely on waiting time, but incorporates a measure of how long patients are expected to live after receiving a transplant (versus remaining on the waiting list). Future editions of this annual report and other SRTR analyses will evaluate the success of this new system.
Comprehensive Report Measures Key Trends Over Time
The report features 10 chapters written by more than 50 national experts in the field of transplantation, analyzing data and identifying trends in transplantation over the last decade. A special-focus chapter in this year’s report examines various ways to measure organ donation rates by donation service area, which has important implications for improving overall rates of organ donation. All 10 chapters, coordinated by the SRTR, have also just been published as a special issue of the peer-reviewed American Journal of Transplantation.
These chapters provide clinical insight into the extensive series of data tables that form the main reference component of the report. These tables, more than 250 in number, include a decade’s worth of information documenting trends and recent comparisons of the following: donation and transplantation rates; demographic and medical characteristics of donors, recipients, and those on the waiting list; time spent on waiting lists; and success rates of transplantation in terms of patient survival and survival of transplanted organs. These tables also include information about immunosuppression therapies and cancer-related data.
As in 2004, the OPTN/SRTR Annual Report is being published exclusively in electronic formats — on a CD-ROM and on the web. The electronic report improves on the previous paper-based publication and last year’s electronic version through improved navigation, interactive indexes, and new guides and glossaries. The electronic version includes HTML and PDF versions of all of the data tables and text chapters. The full report is available at the SRTR’s and OPTN’s web sites, www.ustransplant.org and www.optn.org; free CD-ROMs of the report may be ordered at either site.
The OPTN is administered by the United Network for Organ Sharing (UNOS), in Richmond, Virginia; the SRTR is administered by the University Renal Research and Education Association (URREA), in Ann Arbor, Michigan, in collaboration with the University of Michigan. UNOS and URREA collaborated to produce this report under contract with the Health Resources and Services Administration, Healthcare Systems Bureau, Division of Transplantation.
- November 5, 2004: URREA to Embark on New Analysis of Quality Incentive Payments for CMS
URREA, in conjunction with the Kidney Epidemiology and Cost Center at the University of Michigan (KECC), was recently awarded the CMS-funded contract, “Implementation Support for the Quality Incentive Payment of the ESRD Disease Management Demonstration, Implementation and Support for an Advisory Board for the ESRD Bundled Case-Mix Adjusted Demonstration.” The project involves collaboration on two important end-stage renal disease (ESRD) demonstrations that aim to improve the quality of care for kidney dialysis patients:
- Calculating the quality incentive payment for the ESRD Disease Management Demonstration (for which URREA is the primary contractor)
- Implementing and supporting an advisory board for the ESRD Bundled Case-Mix Adjusted Demonstration, including research on payment methodology, clinical factors, and other issues as they pertain to a bundled case-mix adjusted payment system for ESRD
The URREA-led team, with multidisciplinary experts from KECC, will bring extensive professional and organizational capability to bear on this project, which began in October 2004 and will provide ongoing support for the two CMS demonstrations. Under the leadership of Drs. Port, Hirth, and Wolfe, the project will involve cost analysis using both primary and secondary data sources, formulating the methodology/analysis plan for the incentive payment and bundled case-mix adjusted payments, and analyzing ESRD data. Investigating ESRD outcomes, costs, and payment structures in the context of health system changes stands at the center of this team’s core research interest and expertise. The research team at URREA and KECC is pleased to have this opportunity to help improve patient care by building on its experience in health services research, and Medicare delivery and payment systems.
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October 29, 2004: Drs. Held, Port, and Wolfe Honored for Contribution to Care for Patients with Renal Disorders
ANN ARBOR, MI – The American Society of Nephrology will present Drs. Philip J. Held, Friedrich K. Port, and Robert A. Wolfe with the 2004 Belding H. Scribner Award for outstanding contributions to care of patients with renal disorders. ASN will present the award at the 2004 Renal Week Conference beginning October 29, 2004, in St. Louis, MO.
“I feel that this award recognizes the importance of the new field of evidence-based medicine and outcomes research,” said Dr. Port. “From my perspective, it is very appropriate that the three of us were honored jointly. Our clinically relevant work and new direction to successful outcomes research in kidney disease, dialysis and transplantation could not have been possible without working closely as a team for almost 20 years. What keeps us so committed is that there are patients’ lives behind these efforts.”
Drs. Held, Port, and Wolfe are prominent researchers with expertise in health economics, clinical nephrology epidemiology, and biostatistics, respectively. They continue to be pioneers and leaders in health outcomes and clinical research for kidney disease and transplantation. This powerful and multidisciplinary team has coordinated and launched significant projects including the United States Renal Data System (USRDS), the international Dialysis Outcomes and Practice Patterns Study (DOPPS), and the Scientific Registry of Transplant Recipients (SRTR). Over a span of many years, they have published extensively on a wide range of topics related to nephrology, including cost-effectiveness, dialysis and transplant practices, and study design. Each of their collaborative projects has had the end goal of improving patient lives through the clinical integration of medical practice and outcomes research. Their work in these fields has been internationally recognized.
Background:
The Belding H. Scriber Award is presented annually to one or more individuals who have made outstanding contributions that have a direct impact on the care of patients with kidney disorders or have substantially changed the clinical practice of nephrology. Established in 1995, this award honors the physician who developed the arteriovenous shunt that first made long-term hemodialysis for chronic renal failure possible.
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July 7, 2004: NKF and URREA Partner to Improve Outcomes for Hemodialysis Patients
Ann Arbor/New York -- Improved standards of care and increased longevity for hemodialysis patients are the goals of a formal partnership announced today between the National Kidney Foundation (NKF) and the University Renal Research and Education Association (URREA). This partnership will bring together experts in nephrology, policy development, and scientific research methods to coordinate evidence based clinical practice guidelines developed by the NKF’s Kidney Disease Outcomes Quality Initiative (K/DOQI) with research from URREA’s Dialysis Outcomes and Practice Patterns Study (DOPPS).
“There is a long-standing synergy between the science supporting the K/DOQI guidelines and the research findings of DOPPS,” said Friedrich K. Port, M.D., president of URREA. “Through the analysis of practice patterns we expect to uncover new treatment strategies that will benefit patients.”
“DOPPS offers a prospective and longitudinal source of data on dialysis practices and patient outcomes that is unmatched in its scope and detail,” explained Brian Pereira, M.D., president of NKF. “These data can provide critical evidence supporting current K/DOQI guidelines for dialysis patients and identify new areas for guideline development.”
“The DOPPS data have been instrumental to many NKF initiatives aimed at improving patient outcomes, from our 13 published K/DOQI guidelines to a new international effort we are assisting, KDIGO (Kidney Disease: Improving Global Outcomes), which will promote worldwide coordination of clinical practice guideline development and implementation,” said John Davis, chief executive officer of the NKF. “Our collaboration with URREA will have even greater synergy on a global basis, since DOPPS consistently provides the most comprehensive source of international data related to dialysis.”
Upcoming NKF-URREA Activities
NKF and URREA are developing a special supplement to the November 2004 issue of the American Journal of Kidney Diseases focused on K/DOQI guidelines and research from the DOPPS. NKF will feature DOPPS data in its forthcoming publication, Chronic Kidney Disease Best Practice. The organizations will seek to co-present results from their partnership at nephrology clinical meetings, including NKF Clinical Meetings, ASN Renal Week, ANNA, and the International Dialysis Conference, among others.
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May 14, 2004: SRTR Report on the State of Transplantation Published in the American Journal of Transplantation
Released to Coincide with the American Transplant Congress
Ann Arbor, MI – The Scientific Registry of Transplant Recipients (SRTR) is releasing the second annual SRTR Report on the State of Transplantation today, to coincide with the American Transplant Congress (ATC). The report, published in the American Journal of Transplantation, comprises 10 peer-reviewed articles written by more than 50 national experts in the field of transplantation, analyzing data and identifying trends in transplantation over the last decade.
Dr. Robert Merion, guest editor for this issue of the American Journal of Transplantation, notes that “This year, we have included even more up-to-date analyses of national transplant data, providing transplant caregivers and other medical professionals access to critical information for patient care and public policy development in the field.”
These articles provide clinical insight into the extensive series of data tables that form the main reference component of the 2003 OPTN/SRTR Annual Report, released earlier this year and available at the SRTR web site. In a special-focus article in this year’s report, Dr. Richard Freeman, Jr. and colleagues examine the adoption and early effects of a new liver allocation policy, the Model for End-stage Liver Disease and Pediatric End-stage Liver Disease allocation system (MELD/PELD), which was introduced in 2002. The results of the study suggest that the new allocation system is successfully providing the benefits it was designed to promote.
The report will be available in a number of media — as bound journals available from the AJT; on the AJT and SRTR web sites; and on free compact discs that the SRTR will distribute at the ATC.
SRTR Activity at the American Transplant Congress Includes Joint Symposium with OPTN
The SRTR will be presenting 19 abstracts (15 as oral presentations) at this year’s ATC in Boston. The abstracts cover a wide range of topics, including pediatric transplantation, expanded criteria donors, nonheartbeating donors, issues of access to transplantation, and simulated allocation modeling. A full schedule of these presentations is available at www.ustransplant.org/atc_2004_brochure.pdf.
Cooperatively with the Organ Procurement and Transplantation Network (OPTN) and the Health Resources and Services Administration (HRSA), the SRTR will present a joint symposium to give conference attendees an overview of SRTR research and OPTN activities. The symposium, scheduled for the morning of Sunday, May 16, will feature several presentations on the challenges of creating evidence-based, efficient, and equitable organ allocation policies, including presentations on waiting list mortality and survival benefit.
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February 16, 2004: Annual HRSA Transplant Data Report Released
Report Includes Special-Focus Article on Liver Allocation Policy
Ann Arbor, MI — This week the Health Resources and Services Administration of the US Department of Health and Human Services published its 13th Annual Report on Transplant Data, summarizing official and definitive data on solid organ transplantation in the United States from 1993 to 2002. The new Transplant Data Report provides data vital to the entire transplant community, including patients, medical professionals, and researchers in many fields. It was prepared jointly by the Scientific Registry of Transplant Recipients (SRTR) and the Organ Procurement and Transplantation Network (OPTN).
The report features 10 chapters written by more than 50 national experts in the field of transplantation, analyzing data and identifying trends in transplantation over the last decade. A special-focus chapter in this year’s report examines the adoption and early effects of a new liver allocation policy, the Model for End-stage Liver Disease and Pediatric End-stage Liver Disease allocation system (MELD/PELD), which was introduced in 2002. All 10 chapters, coordinated by the SRTR, will be published in March in a special issue of the peer-reviewed American Journal of Transplantation.
These chapters provide clinical insight into the extensive series of data tables that form the main reference component of the report. These tables, more than 200 in number, include a decade’s worth of information documenting trends and recent comparisons of the following: donation and transplantation rates; demographic and medical characteristics of donors, recipients, and those on the waiting list; time spent on waiting lists; and success rates of transplantation in terms of patient survival and survival of the transplanted organ (graft). These tables also include information about immunosuppression therapies and cancer-related data.
Key Findings from the Report
During 2002, more than 24,000 organs were transplanted in the US — nearly 18,000 from deceased donors and 6,600 from living donors. During the same period, more than 6,000 patients were reported to have died while waiting for a transplant.
The demand for kidney and pancreas transplantation continued to grow, without corresponding increases in the numbers of available organs. As in previous years, growth in the number of candidates awaiting transplantation of these organs outpaced the growth in organ supply.
Living kidney donation continues to grow in importance: living donor kidney transplants increased from 28% of total kidney transplants in 1993 to 43% in 2002.
The number of patients awaiting liver transplantation decreased in 2002 for the first time in over a decade. This decrease may be attributable to the February 2002 introduction of the MELD/PELD allocation system, which shifts emphasis from waiting time to severity of illness in the prioritization of candidates for liver transplantation.
Electronic Version
This year, the OPTN/SRTR Annual Report is published exclusively in electronic formats — on a CD-ROM and in web-based forms. The electronic report improves on the previous paper-based version through ease of navigation, interactive indexes, and new guides and glossaries. The electronic version includes HTML and PDF versions of all of the data tables and text chapters. The full report is available at both www.ustransplant.org and www.optn.org; free CD-ROM versions may be ordered at either web site.
The OPTN is administered by the United Network for Organ Sharing (UNOS), in Richmond, Virginia; the SRTR is administered by the University Renal Research and Education Association (URREA), in Ann Arbor, Michigan, in collaboration with the University of Michigan. Both contractors collaborated to produce this report under contract with the Health Resources and Services Administration, Special Programs Bureau, Division of Transplantation.
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February 5, 2004: Changing Priority for HLA Matching Could Reduce Racial Inequities in Organ Allocation
Ann Arbor, MI – Research published today in the New England Journal of Medicine shows that removal of Human Leukocyte Antigen-B (HLA-B) matching as a priority for allocation of cadaveric kidneys could increase the number of kidney transplants among non-whites in the U.S. by as much as 6.3%. This change could produce a 4.0% decrease in kidney transplants for whites.
“This research illustrates the relationship between the utility of HLA matching and the racial inequities that develop from it. Changing the allocation policy based on the findings here is expected to reduce that inequity with little adverse effect on post-transplant outcomes,” says Dr. John P. Roberts, a transplant surgeon at the University of California at San Francisco and lead author of the article, “The Effect of Changing the Priority for HLA Matching on the Rates and Outcomes of Kidney Transplantation in Minority Groups.”
HLA typing and the time a patient spends on the waiting list are used to determine kidney allocation in the U.S. Patients with no HLA mismatches are given top priority, followed by those with the fewest mismatches at the HLA-B and HLA-DR loci, since better HLA matching improves transplantation outcomes. Because of differences in common HLA profiles, white patients tend to have fewer mismatches at HLA-B loci than non-white patients and receive more transplants under the current kidney allocation system.
Since this research demonstrated very little benefit with better HLA-B matching, the national rules for kidney transplantation were changed in May 2003 to no longer give priority points for fewer HLA-B mismatches. “Our research supports the premise that this new national rule offers a fairer chance for a kidney transplant to patients of all race groups,” says Dr. Friedrich K. Port, President of the University Renal Research and Education Association and a co-author of the article.
Dr. Roberts’ findings are based on data and analyses from the Scientific Registry of Transplant Recipients (www.ustransplant.org).
- January 28, 2004: Study Estimates the Number of Life Years That May Be Gained When Hemodialysis Practice Guidelines Are Followed
Ann Arbor, MI — Results from a study published this week in Blood Purification estimate that if all US hemodialysis patients were brought within recommended guidelines for certain hemodialysis practices, 143,617 years of patient life may be gained over a five-year period — an 8.2% improvement over life expectancies for such patients following current practices.
Changing the means of vascular access at US dialysis facilities would appear to have one of the greatest impacts on patient life years. Currently, venous catheters (tubes inserted directly into large veins) are used in 28% of US hemodialysis patients. The use of arteriovenous fistulae (accesses that connect a vein and an artery within the arm) instead of catheters could have a profound beneficial effect in increasing the number of patient life years: Bringing catheter use from over 28% to less than 7% of patients in the US may add 33,159 to 68,653 life years to US patients over a five-year period.
“As medical professionals, we need to recognize the impact of the gap between current practices and best practices, not just in the use of catheters, but also for dialysis dose, anemia, and other risk factors” said Dr. Friedrich K. Port, president of URREA and first author of the study, “DOPPS Estimates of Patient Life Years Attributable to Modifiable Hemodialysis Practices in the United States,” which appeared in an issue of the journal focused on dialysis and related treatments. “By relating the number of patients outside the guidelines to associated risks of mortality, this analysis quantifies the relationship between adherence to the guidelines and patient survival,” Dr. Port said.
The study examined other practice patterns strongly associated with patient mortality using data from the Dialysis Outcomes and Practice Patterns Study (DOPPS) and published guidelines from the National Kidney Foundation’s Kidney Disease Outcomes Quality Initiative (K/DOQITM) and the European Best Practice Guidelines for Hemodialysis. Those practice patterns include dialysis dose, correction of serum phosphorus and albumin, management of anemia, and fluid weight gain between dialysis treatments.
The study points out both positive trends and areas of concern. “The DOPPS has found improvement over time in some practices, such as dialysis dose and anemia management. However, many patients still need to be brought within the recommended ranges to achieve better outcomes,” said Dr. Eric W. Young, a coauthor of the article and Associate Professor of Internal Medicine at the University of Michigan.
- November 14, 2003: New Data Demonstrate Improving Care for Dialysis Patients Could Extend Survival
Study Illustrates How Practices, Patients and Policies Affect Patient Longevity
SAN DIEGO (November 14, 2003) – New data presented today suggest that optimizing practice patterns for treating chronic kidney disease (CKD) patients receiving hemodialysis may reduce hospitalization and allow patients to live longer. However, study investigators note there are wide variations in the practices and care indicators in dialysis units around the world.
“The Dialysis Outcomes and Practice Patterns Study (DOPPS) has been able to identify treatment factors that are modifiable and that likely can lead to longer, healthier lives for dialysis patients. This study shows that longevity and quality of life varies by region and by country,” said Dr. Friedrich K. Port, principal investigator for DOPPS.
The new data reveals an association between practices, behaviors and healthcare polices that impact survival of dialysis patients, including the following:
- Dialysis patients, on average, are 60 years of age and have a life expectancy of 4.3 years in the United States.
- Lab values for many of hemodialysis patients remain outside of established NKF-K/DOQI™ clinical practice guidelines.
- Anemia control has improved significantly since the start of the DOPPS study in 1997. Hemoglobin levels have increased from 10.8 g/dL to 11.7 g/dL in 2002. Patients whose hemoglobin level is below the guidelines have a higher risk of being hospitalized and of dying.
- The use of hemodialysis catheters for access to circulation during dialysis has increased substantially in recent years and is connected with greater risk of infections, poorer anemia control and higher mortality risk.
- Control of phosphorus and calcium in the blood is difficult in dialysis patients, but is important for better survival, particularly with regard to cardiovascular disease.
- International results on medication use revealed several opportunities to improve longevity through increased use of various medications, including multivitamins and aspirin, in patients with cardiovascular disease.
“The ultimate goal of the DOPPS is to improve the longevity and quality of life for the more than 900,000 hemodialysis patients around the world,” said Dr. Port, President of University Renal Research and Education Association (URREA). “The numerous findings from DOPPS are timely and relevant to health care providers, policy makers, and patients around the world. We are presenting numerous new and confirmatory results at this meeting and are very encouraged by the interest that has been stimulated by the DOPPS data. These findings will be key to rallying the global nephrology community around the need to better understand how to extend patients lives.”
“We see the DOPPS study as having the same magnitude of impact on chronic kidney disease as the Framingham study had in the world of cardiovascular disease over the past 50 years,” said Dr. Port. “The benefits for patients are already being realized and we are hopeful that our work will provide the stimulus and call to action needed to bring optimized, life-extending care to a larger proportion of hemodialysis patients.”
“The overwhelming body of evidence from the DOPPS complements the National Kidney Foundation’s Kidney Disease Outcomes Quality Initiative (NKF-K/DOQI™) and provides a deeper understanding of best practices that can improve survival, “ said John Davis, chief executive officer of the NKF, which represents the more than 300,000 dialysis patients in the US. “The big challenge is always educating clinicians and entrenching best practices in the day-to-day care of patients. We are very hopeful that the DOPPS data will result in driving further adoption of all eight sets of NKF-K/DOQI™ Clinical Practice Guidelines, as it is mainly through the pursuit of optimizing total dialysis patient care that extended patient longevity will be realized.”
DOPPS Design
DOPPS is an ongoing international, randomized, prospective study based on the collection of observational, longitudinal data of hemodialysis patients at more than 300 dialysis facilities in 12 countries. The study aims to identify dialysis practices that promote longer lives, reduce hospital stays and improve the quality of life for patients. In 1996, DOPPS I was launched in seven countries and in 2002 DOPPS II was extended to include a total of 12 countries. To date, the DOPPS has collected data on more than 80,000 hemodialysis patients. Researchers observe the effects of administrative practices; anemia management; dialysis practices; cardiovascular risk; mineral metabolism; physician, nursing and technician practices; proper nutrition; available social services; and vascular access on CKD.
The Dialysis Outcomes and Practice Patterns Study (DOPPS) is coordinated by research scientists and staff of the University Renal Research and Education Association (URREA) and is supported by research grants from Amgen, Inc. and Kirin Brewery Co., Ltd in Japan. Findings presented at the ASN include data from all twelve countries. DOPPS data are representative of approximately 70 percent of hemodialysis patients worldwide.
Chronic Kidney Disease (CKD)
Chronic kidney disease affects roughly 20 million people in the U.S., resulting in kidney failure, increased risk of cardiovascular events and death; another 20 million Americans are at risk for developing CKD. In 2002, according to the National Kidney Foundation, 326,217 Americans suffered from kidney failure (the final stage of CKD) and required dialysis. This number is expected to increase to an estimated 661,330 by 2010.
About URREA
URREA is a not-for-profit foundation whose purpose is to conduct epidemiological, clinical, and economic studies of kidney and related diseases. URREA is dedicated to the distribution of clinical and economic information and analysis for use by the U.S. and international health care communities. URREA is also dedicated to the education of new investigators in the field of epidemiology and outcomes research.
- October 21, 2003: CMS-Funded Research Will Assess Effectiveness of ESRD Disease Management Models
Ann Arbor, MI – URREA will evaluate the impact of enrolling patients with end-stage renal disease (ESRD) in disease management systems.
This research, funded by the Centers for Medicare and Medicaid Services (CMS), evaluates opportunities for Medicare patients to join integrated care management systems. It focuses on the disease management program structure, processes of care, provider acceptance, costs, and patient outcomes including hospitalization, mortality, satisfaction and quality of life.
The ESRD Disease Management Demonstration, to be evaluated by URREA, will feature two distinct payment models: a capitation payment system and a fee-for-service system. The awardees may include dialysis providers, disease management organizations, managed care plan providers, and integrated health systems. The evaluation of the demonstration will be lead by URREA in collaboration with researchers from the National Opinion Research Center (NORC), the Lewin Group, and the University of Michigan.
Awards to the demonstration sites are expected in early 2004. The demonstration will last four years.
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January 14, 2003: National Registry Provides Comprehensive Look at Organ Transplants
ANN ARBOR, Mich. – The number of patients still in need of organ transplants was more than three times higher than the number of people receiving life-saving transplants from July 1, 2001 to June 30, 2002, based on statistics released by the nationwide Scientific Registry of Transplant Recipients (SRTR).
There were almost 24,000 organ transplants performed in the United States during the year ending December 31, 2001; as of that date, approximately 81,000 patients were still registered as waiting for an organ transplant. An extensive set of statistics based on analysis of transplant and waitlist processes has been released by the SRTR, focusing on activity at individual Transplant Programs and Organ Procurement Organizations across the country
The reports published by the SRTR draw upon an array of data from 1997 to 2002 for approximately 1,000 transplant programs operating across the country during that time. Statistics are presented for comparison of each transplant program with a national average. The SRTR information ranges from characteristics of organ donors and transplant candidates to survival rates for waitlist candidates and transplant recipients.
The transplant and survival rate comparisons are adjusted to take into account observed differences such as high risk donors and recipient factors. The data for this report come from transplant centers, organ procurement organizations and the Organ Procurement and Transplantation Network. The data in this report are enriched by national social security data to capture unreported deaths more completely.
“The Scientific Registry of Transplant Recipients designed the reports to be an effective tool for anyone involved in organ transplantation, including patients, their families, surgeons, physicians and researchers,” said Dr. Friedrich K. Port, SRTR Project Director.
“Our primary concern is patient welfare. Sharing these data will help enrich patient care by making more information available to those involved in transplant procedures. Health care professionals, patients and their families will be able to use these reports to help ensure better outcomes for transplant recipients,” he said.
Dr. Port is president of the University Renal Research and Education Association (URREA), a non-profit health outcomes research organization in Ann Arbor, Michigan, which works closely with researchers at the University of Michigan. URREA manages the SRTR under a three-year Federal contract from the Health Resources and Services Administration, an agency of the U.S. Department of Health and Human Services. As part of the 1984 National Organ Transplant Act, Congress called for the creation of the registry to improve awareness and understanding of organ transplant issues.
The full SRTR reports for each of the 1000 transplant programs and 59 organ procurement organizations are available online at www.ustransplant.org. The SRTR reports cover eight types of organ transplants: heart, heart-lung, lung, kidney, kidney-pancreas, pancreas, liver, and intestine.
SRTR officials recommend that transplant programs and the public use these analyses as one of several sources of information in evaluating programs. In considering their decision to choose a transplant program, patients should consult their doctor and also consider visiting the selected medical center to speak with the staff and other patients.
“The SRTR releases updated statistics on our Web site every six months in order to provide the most up-to-date information. In this report, statistics reflecting new developments in the allocation of kidney and liver transplantation are being reported for the first time,” said Dr. Robert Merion, Clinical Transplant Director of the SRTR and a transplant surgeon at the University of Michigan Health System. “In kidney transplantation, data on the use of kidneys from deceased donors with characteristics associated with a poorer outcome (expanded criteria donors) are reported upon. In liver transplantation, waiting list and transplant statistics reflecting the implementation of a new allocation system (Model for End-stage Liver Disease [MELD]) have been produced. These are two examples of the ability of the SRTR to respond extremely quickly to changes in national policy with new information designed to help the transplant community and the public understand changes in the field of transplantation.”
Producing these reports and findings is a complex process that begins with gathering data from the front lines of transplantation. Transplant data are collected by each transplant program and organ procurement organization and are submitted to the United Network for Organ Sharing (UNOS), the contractor for the Organ Procurement and Transplantation Network (OPTN). The data are then sent to the SRTR, which analyzes and compares them to create the SRTR reports, as well as additional scientific research.
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January 7, 2002: National Registry Provides Comprehensive Look at Organ Transplants
Ann Arbor, Mich. The number of patients still in need of organ transplants was more than three times higher than the number of people receiving life-saving transplants from July 1, 2000 to June 30, 2001, based on statistics released today by the nationwide Scientific Registry of Transplant Recipients (SRTR).
There were 23,360 organ transplants performed in the United States during the year ending June 30, 2001; as of June 30, 2001, approximately 79,900 were still registered waiting for an organ transplant. An extensive set of statistics based on analysis of transplant and waitlist processes has been released by the SRTR.
These reports draw upon an array of data from 1995 to 2001 for 59 organ procurement organizations and about 1,000 transplant programs operating across the country during that time. Organ procurement organizations are regionally located and are responsible for the recovery of organs. Transplant programs are based at hospitals and medical centers. Medical personnel at these programs evaluate potential recipients, perform the surgical procedures, and care for patients after their transplants.
The SRTR information ranges from characteristics of organ donors and transplant candidates to survival rates for waitlist candidates and transplant recipients. Statistics are presented for comparison of each transplant program with a national average; transplant and survival rate comparisons are adjusted to take into account variables such as high risk donors or recipient factors.
"The Scientific Registry of Transplant Recipients reports are designed to be a tool for everyone involved in organ transplantation - patients and their families, surgeons, physicians, and researchers," said Philip J. Held, Ph.D., SRTR Project Director. "Patients are our first concern, and sharing these data will improve patient care by providing more information to all involved in transplant procedures. Health care professionals, patients and their families will be able to use these findings to help ensure better outcomes for transplant recipients," he said.
Dr. Held is president of the University Renal Research and Education Association (URREA), a non-profit health outcomes research organization in Ann Arbor, Michigan, which works closely with the University of Michigan. URREA manages the SRTR under a three-year contract from the Federal Health Resources and Services Administration, an agency of the U.S. Department of Health and Human Services. As part of the 1984 National Organ Transplant Act, Congress called for the creation of the registry to improve awareness and understanding of organ transplant issues.
The full SRTR reports are available online at www.ustransplant.org. Reports are available for each transplant center and organ procurement organization. The SRTR reports cover eight types of organ transplants: heart, heart-lung, lung, kidney, kidney-pancreas, pancreas, liver, and intestine.
The published reports include statistics and analyses on the status of transplantation in the United States through the year ending June 30, 2001. SRTR officials recommend that transplant programs and the public use these analyses as one of several sources of information in evaluating programs. In considering their decision to choose a transplant program, patients should consult their doctor and can also visit the facility and talk with the staff and other patients.
"We update the statistics on our web site every six months in order to provide the most up-to-date information. Dialogue about this information is a great way to get people thinking about how to improve transplantation in this country and encourage organ donation," said Dr. Robert Merion, Clinical Transplant Director of the SRTR and a transplant surgeon at the University of Michigan Health System. "At the same time, we caution patients against using only these statistics to choose among transplant programs or organ procurement organizations, since the process of transplantation is so complex," he said.
Producing these reports and findings is a complex process that begins with gathering data from the front lines of transplantation. Transplant data are collected by each transplant program and organ procurement organization and are submitted to the United Network for Organ Sharing (UNOS), the contractor for the Organ Procurement and Transplantation Network (OPTN). The data are then sent to the SRTR, which analyzes and compares them to create the SRTR reports.
- September 28, 2000: URREA Awarded SRTR
The Health Resources and Services Administration (HRSA) has awarded the Scientific Registry of Transplant Recipients (SRTR) to University Renal Research and Education Association (URREA), a not for profit health outcomes research foundation located in Ann Arbor, MI. URREA will be working in close collaboration with professional colleagues from the University of Michigan. The SRTR is a project to support the ongoing evaluation of the scientific and clinical status of solid organ transplantation in the United States. The contract is for a three-year period, valued at $7.8 million, with a potential to extend for another two years, for a total of $13.4 million for the entire five-year period.
This project will focus on advances in transplantation, and therefore will be essential in improving the lives of patients with end stage organ disease. Dr. Philip J. Held, President of URREA and principal investigator for the SRTR, states, "Patients are our principal concern. By investigating issues of organ procurement, allocation, and patient well-being, the project will contribute information of vital importance to the overall transplant community, including patients, their families, organ donors, transplant care givers, policy makers and payers. We are honored that HRSA has given us the opportunity to play this important role in the transplant community."
Dr. Held and other URREA staff will be working in close collaboration with long-term colleagues from the University of Michigan, including Dr. Robert Wolfe, Dr. Robert Merion, Dr. Friedrich Port, Dr. Akinlolu Ojo, Dr. Alan Leichtman, and Dr. Eric Young. Together, these investigators have a long and well-established reputation for influential work in transplantation, epidemiology, economics, and biostatistics as they relate to patients with end stage organ disease. According to Dr. Wolfe, a world-renowned professor of biostatistics, "Our team has a long and successful history; we look forward to working to provide research results that will have a direct impact on patient outcomes and that will be useful for making important decisions on behalf of the transplant community." Dr. Merion, a highly respected transplant surgeon, states, "Development of transplantation policy has always required a balancing of scientifically validated empirical information with humanistic values. The SRTR looks forward to working with the Organ Procurement and Transplant Network on these issues."
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