Have you or your child had a pancreatectomy to manage diffuse HI? If so, you may qualify to take part in a non-treatment interview study with the Congenital Hyperinsulinism International (CHI) Research Team. During the interview, you and/or your child will be asked to share your experience including the role of pancreatectomy in managing your/ your child’s diffuse HI, and the impact of this surgery on your life.
Participants can join the study in one of the following categories:
- Caregivers of individuals with HI who had a pancreatectomy to manage diffuse HI
- Adults with HI who had a pancreatectomy to manage diffuse HI
- Individuals with HI (ages 12-17) who had a pancreatectomy to manage diffuse HI (accompanied by a caregiver)
We are seeking about 20 individuals total for this research study.
Activities
If you decide to participate in this study, you will be asked to do the following activities:
- Complete 7 of the surveys in HIGR [ https://congenitalhi.org/higlobalregistry/] HIGR is the only patient-powered HI registry that captures information about life with HI through surveys and data collection. HIGR is available to people with HI and their caregivers. Using HIGR to share your experiences helps researchers design better treatments and teaches clinicians how to better care for people with HI. The time to complete each survey varies but most take about 15 minutes (between 5 and 30 minutes). The surveys that must be completed to participate in this study include Contact and Demographics, Surgical Management, Diagnosis, Quality of Life, Other Medical Conditions, Medical Management, and Glucose Monitoring
- Participate in an online interview via Zoom with the CHI Research Team (60 minutes for participants 18 years old and older, 30 minutes for participants 12-17 years old). Interviews will be conducted in English and are open to individuals in the US and internationally.
During these activities, you will be asked questions about your experience with HI, including the pre-surgery decision making process for pursuing pancreatectomy, the surgery itself, post-surgery transition, current medical status, and quality of life. All activities and questions are optional. You may skip any part of this study that you do not wish to complete, and you may stop participation at any time.
If you or your child are eligible to participate in this study, CHI will contact you about scheduling a one-on-one online interview at a convenient time. Individual participants will receive a $125 gift card. Individuals who are participating as pairs (caregivers with their child) will be offered a $200 gift card ($75 for the child’s 30-minute interview and $125 for the 60-minute caregiver interview).
The study is being led by CHI researchers alongside HI clinicians and has been reviewed and approved by an ethics committee/ Institutional Review Board (IRB). This study is being funded by Rezolute. CHI is leading and driving all aspects of the study including data collection, management, and analysis. All data collected through the study will be anonymized for both data analysis and reporting.
Please contact info@congenitalhi.org if you have any additional questions about the study or your participation.
