Grant: Travel Awards - Institute Community Support

Transplant patients have a higher risk of hospitalization, intensive care admissions, and death due to COVID-19 than the general population. The pace of the evolution of the pandemic has made it difficult to deliver research results in time to still be relevant for clinical and policy decision making. Consequently, decision makers must determine eligibility and recommendations for therapeutics often without any real-world evidence in prioritized patient populations. This inadequate evidence base has contributed to the high variability in transplant patients' access to therapies across the country. It has been very challenging for researchers to react quickly to emerging questions during the pandemic. The traditional research lifecycle of identifying questions, developing a proposal, securing funding, and setting up a study has proven slower than the pace of SARS-CoV-2 variant evolution and changes in practices and policies. Consequently, many investigators have found their original plans invalidated, infeasible, or the results were of limited eventual usefulness. In transplantation, smaller-scale, shorter-term, single-site studies have been the main source of knowledge. Such studies are quicker but are limited in their ability to inform issues such as therapeutic cost-effectiveness or patients' long-term recovery. To address this challenge, we have established a national, multi-disciplinary team and are developing an agile, collaborative framework to address emerging research questions and keep pace with the evolution of the pandemic. We are creating a prospective registry of over 2500 transplant patients and their caregivers and in this presentation, will share our progress on emerging questions on (1) therapeutic effectiveness and safety; (2) mental health, long-term well-being, and family impact; and (3) therapeutic cost-effectiveness and economic burden on the health care system and on families.