In research on quality of life for children with SBS/IF and their families, the SBS community has generally not been included in the design of research projects and tools. We believe that patients and families are the true experts in this experience, and should be brought into the research process from the beginning.
We believe the SBS community should have a voice in:
defining research priorities
developing research questions
developing survey tools reflective of the SBS experience
The goal of this project is to bring patient and family member voices to the forefront and reshape the narrative around quality of life with SBS for children and their families.