Foundation Partners with COMBINEDBrain to Launch GSD IV BioBank
November 13, 2025
The APBD Research Foundation is excited to announce the launch of the GSD IV BioBank in partnership with COMBINEDBrain.
Following considerable research and analysis, the Foundation has partnered with COMBINEDBrain to create a centralized GSD IV BioBank. This biobank -- where patient data, patient biosamples, and patient surveys are linked -- offers academic and industry researchers access to a larger set of biosamples and more data than they may be able to collect themselves.
Are you interested in participating in and providing samples to
the GSD IV BioBank? Fill out this questionnaire!
A large catalog of biosamples can be diverse, better capturing the variability of patients’ symptoms and severity of disease in the GSD IV continuum, including APBD (the late-onset form of GSD IV) and Andersen Disease (the early-onset form of GSD IV). Furthermore, having a central biobank can reduce overall research costs through resource sharing and improved collaboration across institutions. Overall, the Foundation believes the biobank will expedite scientific discovery.
For the Foundation and our community, the partnership with COMBINEDBrain provides a support network to help collect and manage patient biosamples along with electronic health records and patient-reported outcomes surveys. This collaboration also provides unique opportunities to participate in Foundation-directed and/or COMBINEDBrain-driven research initiatives, such as cross-disease biomarker studies and drug repurposing studies.
In early November, the Foundation initiated the GSD IV BioBank with a pilot collection effort by five patients from our community and their families. These GSD IV BioBank pioneers agreed to provide feedback on their experiences as they moved through the biosample collection steps. Their experiences will help to streamline and tailor the process for the community members who follow them. Thanks to these pioneer volunteers, our Foundation is now preparing to take the next steps to expand the GSD IV BioBank to include our entire community.
Lindsay Gill, Ph.D., the Foundation's Research Manager said, “We are so grateful for the willingness of the five pioneering patients to help forge this path with us. Their effort will help lay the groundwork for expanding our GSD IV BioBank to include more patients in 2026 and beyond. These biosamples are precious resources that researchers and pharmaceutical companies are looking for to support drug discovery and development.”
Interested in helping us underwrite the cost of expanding our GSD IV BioBank initiative? Please email Lindsay Gill, PhD at lindsay@apbdrf.org.
About COMBINEDBrain
COMBINEDBrain, the Consortium for Outcome Measures and Biomarkers for Neurodevelopmental Disorders, is a non-profit organization focused on paving the path to treatments for genetic neurological disorders. The consortium consists of over 120 patient advocacy groups and works with clinicians, researchers, and industry partners to facilitate research across the numerous diseases and disorders that are represented.
Related Resources:
What is a Biosample? Check out the recording of our recent Patient Chat about biosampling.