Research Registries

Turning "Big Data" in transplant into

Big Innovations for Improving Patient Outcomes

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We create, support, and run registries in organ transplant.  From the "big data", we extract new knowledge that is not always obvious. Listed below are a current research registries that we are running right now. Check back often, as we will be releasing details of additional new registries we are working on.

 

Intestinal Failure Registry

We host the Intestinal Transplant Registry (IFR). The mission of the IFR is to track and understand the outcomes related to intestinal failure in order to support new efforts and improve outcomes for people with intestinal failure. This registry began in 2018 and will continue to grow in the upcoming years  We hope we can learn and work together to make significant improvements in intestinal failure.

To access to the IFR Redcap portal




International Intestinal Transplant Registry

We host the International Intestinal Transplant Registry (ITR). The mission of the ITR is to provide data on the outcomes of intestine transplantation to the international intestine transplant community in order to support their efforts and improve outcomes as well as inform policy development. We are also working with the Intestinal Rehabilitation and Transplant Association (ITRA) of the Transplantation Society to make the registry even better.

To access to the ITR Redcap portal

Patient Reported Outcomes Registry

We believe that how the transplant patient feels is very important. We currently need a better understanding of who people who have received an organ transplant feel so that we can inform drug companies to get medications do what they are supposed to do without cause side effects. We also know that being living with an organ transplant is not easy and want to increase the voice of the needs of the patient so that care and therapies improve. To get a stronger collective voice of transplant we are launching the patient reported outcomes registry in the Summer/Fall of 2019. Stay tuned for more information.



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