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:
New this month: Attention to living donor parents
NIH-funded research study to obtain better health outcomes and healthcare utilization data on living donors. More information via the flyers below:
Pediatric Heart Transplant Families - Out of Pocket Expenses
Pediatric Heart Transplant Families, In an effort to better serve the families of our pediatric patients who have received a heart transplant, we as a Pediatric Transplant Community are asking for your participation in a research study. We know that a heart transplant can lead to many out-of-pocket expenses, some of which are not covered by insurance. By clicking the link below, you will be directed to a survey that will ask you questions regarding your out-of-pocket expenses related to the care of your child who has received a heart transplant. By gaining a better understanding of how much our families pay out-of-pocket, we hope to be able to provide more resources to our transplant families in the future.
Study Contact: Whitney Kaslow, DNP, APRN Pediatric Heart Transplant Vanderbilt Children’s Hospital https://redcap.link/expense
Pediatric Heart Transplant Families - Perspective on Ex Situ heart perfusion (ESHP)
Calling all pediatric heart transplant families! We would like to invite you to take part in a research study (Pro00096090) at the Stollery Children’s Hospital and have a chance to earn approximately $50 in Amazon credit. The aim of this study is to understand the pediatric heart transplant community’s knowledge and perspective on ex situ heart perfusion (ESHP) in the pediatric donor pool. Ex vivo or ex situ organ perfusion is a method of perfusion of the donor heart, allowing extended out-of-body time as well as assessment of the organ prior to implant. We are asking parents/caregivers of heart donors, recipients, and children on the heart transplant wait list to take part in this study.
The study involves having a one-on-one virtual interview. The interview will take approximately 30 minutes to complete and will be recorded and transcribed.
Each participant will receive a $50CDN Amazon gift card as a token of appreciation for his or her time.
For more information about the study and to participate, please contact the Research Coordinator, Tara Pidborochynski (firstname.lastname@example.org)
Pediatric Kidney Transplant Families
Do you have a child with nephrotic syndrome or related kidney disease such as FSGS, IgM Nephropathy or Membranous Nephropathy? We are looking for parents and guardians of children with nephrotic syndrome to participate in a research study. Learn more: https://www.prepare-ns.org/get-involved
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