Opportunities For
Researchers
Partnering with Experts
The United MSD Foundation is always striving to work with researchers to advance their studies be it as a collaborative partner or through financial support.
United MSD Foundation Biobank
In conjunction with Genetic Alliance, the United MSD Foundation houses biological specimens (blood and urine) in Frederick, Maryland at the Precision for Medicine Biobank. We have collected and processed samples from around the world and provided them to researchers interested in identifying crucial biomarkers. If you are interested in learning more about the samples that we house or how to collaborate in the future, please contact our Patient Research Coordinator.
Partners
Patient Registry
The United MSD Foundation Patient Registry, hosted on the MyDataHelps platform, is a valuable resource for researchers studying Multiple Sulfatase Deficiency (MSD). It collects longitudinal, patient family-reported data through online surveys completed by parents of individuals with MSD. Researchers may request access to de-identified survey data to support natural history studies, identify clinical trial endpoints, and inform the development of diagnostics and treatments. Interested in learning more? Contact our Patient Research Coordinator.
Let’s Connect
Connect with MSD families and get valuable information from medical researchers and doctors.