International Intestinal Failure Registry
119.1 - International Intestinal Failure Registry - Data Collection and Reporting
Presenter: Matthew Everly, Los Angeles, CA, USA, Yaron Avitzur, Toronto, ON, Canada , ,
Authors: Matthew Everly, Yaron Avitzur
Dr. Everly and Avitzur will review the definitions and data collection forms of the IFR, discuss data collection, explain data reporting schedules and usage of the REDCap system and will answer questions in relation to those topics.
Matthew Everly Biography:
Dr. Everly is the Director of the Terasaki Research Institute and is committed to collaborating with others and innovating for transplant patients. A transplant pharmacist by training, he has cared for patients and has led large research efforts to understand chronic rejection and the lives of transplant patients. Currently, Dr. Everly research falls into three categories: epidemiological, patient center outcomes, and translational science. Dr. Everly is leading a large effort to understand transplant patients through “big transplant data” collaborations. In Dr. Everly’s effort to develop creative solutions to transplants biggest problems (i.e. transplant organ rejection, organ donor shortage, and the lack of patient voice in transplant), he has developed alliances across the globe in both academia and mobile health technology /pharmaceutical industry. Dr. Everly currently runs many big efforts in transplants including international registries (International Intestinal Transplant Registry), and epidemiological and translational research with individual transplant centers. Dr Everly is also strongly focused on developing a better understanding of the decisions and preferences (patient reported outcomes) in both the patient’s awaiting and those who have received a transplant. He is developing a patient advocacy network to help facilitate patient-centered research in organ transplant. He has begun studies to better characterize patient reported outcomes in transplant and studies to better understand medication non-adherence. Throughout his research, making sure that patients and physicians can make informed shared decisions in transplant his focus.
Yaron Avitzur Biography:
Dr. Avitzur is an Associate Professor at the University of Toronto, and the Medical director of the joint program in Intestine Transplantation, University Health Network and Hospital for Sick Children and the Intestinal Failure program (GIFT) at the Hospital for Sick Children. Dr. Avitzur research work is within the fields of intestinal failure and intestine and liver transplantation looking at long-term patient outcomes, transplant listing indications, congenital diarrhea and immune dysregulation after liver transplantation. He currently leads the International Intestinal failure registry under the Intestine Rehabilitation and Transplantation Association (IRTA).
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