Project: Disease Concept Model
Primary Researcher: Grace Branger - Vanderbilt University Medical Center
Grant Details
Project funded for 1.5 years for a total of $5,000, supported through a partnership with COMBINEDBrain.
Aims of Grant
A Disease Concept Model (DCM) is a foundational research tool used to systematically capture what it is truly like to live with a specific condition. For Okur-Chung Neurodevelopmental Syndrome (OCNDS), there is a critical need to center the lived experiences of individuals and families to ensure that future research, clinical trials, and care strategies reflect outcomes that matter most to the community. The primary aim of this project is to develop an OCNDS-specific Disease Concept Model by directly engaging individuals with OCNDS and their caregivers. This model will inform researchers, clinicians, industry partners, and regulators about the most meaningful symptoms, daily-life impacts, and priorities for therapeutic development and clinical decision-making.
Project Description
This study will involve 60–90 minute, semi-structured interviews with individuals diagnosed with OCNDS and/or their caregivers. Interviews will explore symptom experiences, functional challenges, and quality-of-life impacts across the lifespan.
Insights gathered will be systematically analyzed to identify core disease concepts and outcomes of highest relevance to the OCNDS community. These findings will directly support future clinical trial endpoint selection, natural history studies, and patient-centered care strategies.
Eligibility
- Individuals worldwide with a confirmed diagnosis of OCNDS
- All ages welcome
- Participants must be English-speaking
Contact
Grace Branger