Study and Advocacy Opportunities (January 2022)

We are working with our friends and partners to give transplant families access to many different medical study and advocacy opportunities. Here are this months:

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Pediatric Liver Transplant Families - Starzl PARTNER Project

The Starzl Network for Excellence in Pediatric Transplantation in collaboration with UPMC Children’s Hospital of Pittsburgh, UCSF Benioff Children’s Hospital, Starzl Network Patient & Family Voice, and Transplant Families recently received a Patient Centered Outcomes Research Institute (PCORI) Eugene Washington Engagement Award. The two-year award will support our project, PAtient-centered Research in pediatric TransplaNt-Engaging families+Recipients (PARTNER).

PARTNER represents a novel effort in the field of transplantation: it is co-led by parents of transplant recipients and healthcare providers. In PARTNER, we seek to build on the established bonds between providers and patient partners, using the infrastructure and partnerships of the Starzl Network and Transplant Families to expand from personal relationships into organizational partnerships with shared priorities, knowledge, and a sustainable capacity to do collaborative patient-centered outcomes research (PCOR).

To participate it is preferred that your child is seen at a liver transplant center that is a participant in the Starzl Network. PARTNER - Starzl Network

COMPENSATION AVAILABLE

Making visible the life stories of families of children who are immunocompromised during COVID-19

We want to understand and document the lived experience of families with a child who is immunocompromised (IC) or has an immune-system condition (ISC) during the COVID-19 pandemic. Families from across Canada who have a child under 18 who is IC/ISC are invited to participate. During the study, you, as well as each family member who desires, will participate in an interview with a research staff member. You will also participate in a photograph activity and discuss the photos in an interview. Then, you have the option create a short video with your family which we will then all discuss together. Everything can be arranged at your own convenience. You will also be provided with an honorarium for taking part in the study. Your participation in this study will provide important insights into the experience of families with children who are IC/ISC throughout the current COVID-19 and future crises. You can take the study at a pace suitable to your families’ life schedule, the study will be going on till May 2025.

If you are interested in our study and/or have any questions, please contact the research team at ingauge@umanitoba.ca or call 204-480-1051.