Participate in Research
Seeking Volunteers from the APBD Community:
Help Advance APBD Biomarkers Research Through the “Pee for APBD” Study
Dr. Berge Minassian and Dr. Mayank Verma at the University of Texas Southwestern Medical Center are working on a research study aimed at looking for specific urine biomarkers in urine samples. For this study, they are looking to recruit the following from our community:
- patients with APBD
- individuals with an APBD diagnosis, but no symptoms (asymptomatic individuals)
- carriers with a genetic confirmation
- family members of patients in the same household
The exclusion criteria include:
- active urinary tract infection
To learn more or to participate in this study, email Dr. Verma at mayank.verma@
After completing the informed consent and a short survey, a box of supplies will be shipped to your home by the research team. The patient, and if possible family members, should collect the urine sample(s) and schedule a pre-paid pick up. No site visits are required.
Seeking Volunteers from the APBD Community:
Help Advance APBD Biomarkers Research Through An Innovative MRI Study
Nirbhay Yadav, PhD, assistant professor at the F.M. Kirby Center, at the Kennedy Krieger Institute is seeking volunteers for an important study aimed at identifying a biomarker for APBD.
Traditional MRIs often reveal structural brain changes in APBD patients. Dr. Yadav is exploring innovative MRI methods that seek to image glycogen itself. If successful, the glycogen images could possibly serve as disease biomarkers.
If you are able to travel to Baltimore to participate in this study, here is more information:
Location: Kennedy Krieger Institute
Address: 707 N. Broadway, Baltimore, MD 21205 (Johns Hopkins Medical Campus)
Volunteer Requirements: 5-15 adults diagnosed with APBD are needed to undergo magnetic resonance imaging (MRI) scans of the brain or body. This research is being done to develop new types of MRI scans that are more sensitive to tissue changes compared to current methods. Volunteer participants are required to lay within the MRI scanner for up to 60 minutes. The MRI scan does NOT involve any radiation or injections.
For more information, please email Nirbhay Yadav, PhD at nyadav@jhu.edu.