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:
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
Caregiver Education for Pediatric Patients Utilizing Ventricular Assistive Devices (VADs)
This study is being conducted to assess the current caregiver education protocols for pediatric patients who utilize a VAD and are either preparing to or are discharged to a ward or home setting. Data will be used to determine the impact of occupational therapy within this population as well as the strengths/ weaknesses in current caregiver education protocols to determine any need for modification or additions. Caregiver Education for Pediatric Patients Utilizing Ventricular Assistive Devices (VADs) Title of Study: All genders Ages 18-85 Caregiver of pediatric VAD patient discharging/discharged home within the last 5 years. Inter-professionals working with pediatric VAD patients discharging/discharged home within the last 5 years.
Who is eligible? Interested?
Please contact: Cassie Colthurst email@example.com if you have questions, comments, or concerns.
Looking For Research Participants THIS PROJECT HAS BEEN REVIEWED AND APPROVED BY THE UNIVERSITY OF ST. AUGUSTINE FOR HEALTH SCIENCES INSTITUTIONAL REVIEW BOARD FOR THE PROTECTION OF HUMAN SUBJECTS. IF YOU HAVE QUESTIONS OR CONCERNS, PLEASE CONTACT THE INSTITUTIONAL IRB CHAIR, DR. LORI KUPCZYNSKI, EMAIL: LKUPCZYNSKI@USA.EDU, PHONE: 904-330-1559.
Note: Survey time is expected to be no more than 15-20 minutes; at the end, you may choose to participate in/ schedule a follow-up interview that will be no more than 45-60 minutes.
Enduring Hearts Family Program Feedback Survey
On behalf of Enduring Hearts, we thank you for taking a few moments to complete this important survey.
Your input will help us craft programs to meet the needs of pediatric heart transplant patients and their families. The survey should take no longer than 10 minutes and your responses will be kept anonymous.
At the end of the survey, you will be invited to enter a random drawing to win one of six gift cards worth $75 each. We will need your email address to notify you if you win but your identity will not be linked with your survey responses.
You will also have the option to join our contact list. Again, your identity will not be linked with your survey responses. If you have any questions about the survey, please contact firstname.lastname@example.org.
Thank you so much for your help
The Enduring Hearts Team
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 email@example.com or call 204-480-1051.