Change Of Heart Support Group


The PORTEL Registry (which stands for Patient Outcomes Registry for Transplant Effects on Life) is a survey based quality-of-life study that focuses on transplant recipients. In general, quality of life (QOL) has been found to improve following organ transplantation, however, studies have demonstrated that post-transplant adverse events including those attributable to immunosuppressive therapy can impair patient QOL. The PORTEL Registry aims to collect and analyze longitudinal data on the impact of organ transplantation and various immunosuppressive regimens on post-transplant quality of life. In addition, PORTEL endeavors to serve as an information source for people living with transplants by developing educational tools based on results of the study.

Currently, the PORTEL Registry consists of over 1200 patients from transplant centers across the country. Patients complete a survey every 6 months. Key domains of the survey include health status, socioeconomic resources, medication overview, physical appearance, immunosuppressant side effect profile (Memphis Survey), and quality of life (SF-12).

An analysis of the first 454 patients showed that transplant patients have a similar QOL compared to the general population in terms of mental health, but impaired QOL in terms of physical health. Also, this analysis indicated that key differences in side effects exist among patients on cyclosporine vs. tacrolimus-based immunosuppressive regimens. A longitudinal analysis was also performed on a cohort of 274 patients who had a baseline and 6 month follow up survey. This analysis showed that side effects related to immunosuppressant use emerge as major predictors of the change in quality of life scores between initial survey and 6-month follow-up.

The PORTEL Registry is actively enrolling transplant centers interested in working with us to administer the PORTEL surveys. We are looking to develop strong working relationships with our centers and act as a resource by providing regular reports to benchmark transplant centers using outcomes data. Each center will be responsible only for administering each patient's FIRST survey. All patient tracking and follow-up will occur through the PORTEL Registry.

If you are interested in getting more information about the PORTEL Registry, please feel free to contact Allison Ellman, MPH, or John Shannon toll free at (866) 344-7626 or via email at They will be more than happy to answer any questions and provide more information for you.


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