CINCINNATI—An international registry of patient data established in 1968 has reached 3,000 consults from transplantation physicians and care providers across the world.
The University of Cincinnati (UC) transplant team with the Israel Penn International Transplant Tumor Registry (IPITTR) made the 3,000th consult late last week to a physician from SUNY Buffalo for a patient experiencing a post-transplant lymphoproliferative disorder.
IPITTR is the largest and most comprehensive resource of its kind in the world, providing data on transplant recipients and donors who have had or developed malignances during their treatment. The registry was founded by Israel Penn, MD, as the Denver Transplant Tumor Registry, when Penn was the first person to report on the increased incidence of malignancy following transplantation.
Through his career, Penn collected data on more than 15,000 patients for the voluntary registry and published more than 300 works on malignancy in transplantation. Following Penn's move to UC, the registry was renamed the Cincinnati Transplant Tumor Registry. In 1999, it was posthumously named the Israel Penn International Transplant Tumor Registry (IPITTR).
"The mission of the registry remains unchanged: to provide members of the transplant community with substantive data through research and publication and to provide consultative assistance in an effort to positively impact the quality of care available to organ recipients," says E. Steve Woodle, MD, director of UC's transplant division and member of the IPITTR board of directors. "The decades of consultations to the transplant community are the major reason for the breadth and depth of information in the registry."
Today, IPITTR houses data submitted by 615 transplant centers around the world, 315 of those from the United States. The data comprises a full medical picture of patients with transplant-related tumors. Using that data, along with information from Penn's and others' published works, IPITTR staff are able to provide more than 400 consultations a year for transplant caregivers.
Information provided by the IPITTR is not intended to be the sole basis for treatment, but rather to complement the physician's own knowledge and judgment.
"Transplant physicians and coordinators are very appreciative of the service," says Rita Alloway, PharmD, director of transplant clinical research at UC. "It allows them to reach data on thousands of patients in a timely manner with one call or e-mail. For some malignancies, clinicians may see a similar case once in their careers. Access to the IPITTR provides the clinician with insight to additional cases around the world to facilitate the care of the individual patient."
"IPITTR is really one of the go-to resources in transplantation," says Ron Shapiro, MD, director of the kidney, pancreas and islet transplant program at the University of Pittsburgh Medical Center Thomas E. Starzl Transplantation Institute. "A lot of questions in transplantation haven't been answered in randomized controlled trials and they never will be. So you're relying on clinical judgment. The registry is an irreplaceable resource in making those decisions."
For researchers, IPITTR holds data available for descriptive reports, multi-variate analyses and clinical trials and produces publications analyzing that data for the transplant community.
Alloway says the work would not be possible without the IPITTR staff manning the registry, answering near daily consultation requests. "Our staff, Tara Peterson and Mike Alonzo, MD, have greatly improved the service component of the registry. Dr. Woodle also fields many calls from transplant surgeons who have identified an unexpected potential malignancy during surgery. The ability to speak directly to another expert surgeon is paramount to the transplant team and ultimately all patients impacted."