Have you or your child ever used diazoxide? 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 with diazoxide, the related side effects, and its role in managing your/ your child’s HI.
Participants can join the study in one of the following categories:
- Caregivers of individuals with HI who are currently or were previously on diazoxide
- Adults with HI who are currently or were previously on diazoxide
- Individuals with HI (ages 8-17) who are currently or were previously on diazoxide (accompanied by a caregiver)
The interviews will take place online and will last up to 60 minutes for adult participants (18 years old +) and up to 30 minutes for younger participants (8-17 years old). By talking with both children with HI and their caregivers we are hoping to get a more complete understanding of the treatment’s effects from both perspectives. To participate in these interviews, we ask that all participants (or their caregivers) first complete the HI Global Registry (HIGR) surveys; if already completed, the last completion date must be within the previous year.
All interviews will be conducted in English and are open to individuals within the US and internationally. 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 and includes research representation from their team, however, 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.
The CHI Centers of Excellence Program designates those specialist facilities providing the highest quality of care for HI patients and their families around the world. All centers who receive this designation will demonstrate excellence in clinical care, academic research, collaboration, and a commitment to patient care.
This systematic review of HI centers, which will result in a COE designation for HI, will help parents of children with the condition and adults living with the condition to know where to go for multidisciplinary, coordinated care, treatment, and ongoing medical support.
For many questions you have the option of answering via a text box or via a file upload. In these cases, you can choose which to use based on the format of your information. Once you begin your application you can save it and return prior to submission.
For more information related to the program and how the application will be scored, please visit the CHI website: https://congenitalhi.org/the-chi-centers-of-excellence-coe-program/. If you have any questions, please contact Tai Pasquini, Chief Research Officer, via email tpasquini@congenitalhi.org.