We’re Expanding Our GSD IV BioBank
February 24, 2026
The APBD Research Foundation is excited to announce its 2026 goal of recruiting 15 participants and their families to its GSD IV BioBank!
The Foundation’s partnership with the COMBINEDBrain Biorepository helps to collect and catalog biosamples — blood, plasma, urine, and nasal swabs — throughout the APBD and GSD IV community. In November 2025, the Foundation launched the GSD IV BioBank with a pilot group of five pioneering APBD patients and family members. Now, we are working to expand the BioBank to include APBD and early-onset GSD IV patients, as well as individuals with a presymptomatic genetic diagnosis, carriers, and unaffected family members.
Are you interested in participating? Take our GSD IV BioBank Interest Survey! The survey is only 3 questions and should take less than a minute to complete.
Why is the GSD IV BioBank important for the APBDRF community? The short answer is a complicated concept: clinical trial readiness, which refers to the availability of research tools, infrastructure, and an advanced understanding of a disease to support high-quality clinical trials.
The gathering of patient and community member biosamples in the centralized Foundation-managed GSD IV BioBank supports clinical trial readiness by providing the resources needed to uncover disease biomarkers and evaluate the effectiveness of candidate drugs in patient samples. Biomarkers are a crucial tool for diagnosing disease, measuring disease progression, and evaluating whether a drug is effective in treating disease. Ultimately, it is difficult to fix what cannot be measured – and biomarkers are the solution.
While the GSD IV BioBank itself can be a necessary tool for clinical trial readiness, the biosamples also support researcher-initiated studies from scientists and clinicians. As a Foundation-led initiative, we have the opportunity to connect with all APBD and GSD IV patients and families across the United States to collect samples for the biobank. This will provide a larger database of samples than what may be found at a specific institution – meaning biosamples can be studied from more patients.
If you have any questions about the GSD IV BioBank, please contact the APBDRF Research Manager, Lindsay Gill, Ph.D. at lindsay@apbdrf.org.
RELATED LINKS:
Foundation Partners with COMBINEDBrain to Launch GSD IV BioBank