Seeking Volunteers from the Community:  Shape How Science Understands APBD & Neuromuscular GSD IV

July 15, 2026

The APBD Research Foundation, in collaboration with COMBINEDBrain, is excited to support Holland Whitaker (a Genetic Counseling master’s student at the UNC-Greensboro) with her project to create a disease concept model (DCM) for the adult-onset form of GSD IV (APBD) as well as the the childhood/juvenile neuromuscular subtype of early-onset GSD IV. 

A Disease Concept Model is a research tool that uses patient, caregiver, clinician, and researcher interviews to develop a complete picture of the disease that can be used to inform research and clinical trials.

To be considered for participation, fill out this Interest Form.

 

The following participants are needed for this study:

  • Adult-onset GSD IV (APBD) patients

  • Childhood/juvenile neuromuscular GSD IV patients

  • Caregivers of patients with APBD

  • Caregivers of patients with childhood/juvenile neuromuscular GSD IV

  • Physicians with extensive experience working with APBD or childhood/juvenile neuromuscular GSD IV patients

All participants must be 18 years or older.

Participation involves a single, 1-1.5 hour virtual interview. Participant interviews will be recorded and transcribed – all identifiable records will be destroyed at the end of the study.

TAKE ACTION: To be considered for participation, please fill out this Study Interest Form.

NEED HELP? If you have any questions, contact Holland Whitaker at HEWHITAKER@uncg.edu or Lindsay Gill, PhD, APBDRF Research Director, at lindsay@apbdrf.org.

For more information, see the recruitment flyers below:

ADDITIONAL LINKS: