Research Opportunities
Make Your Data Count
Data from individuals affected by MSD is vital to better understanding the disease and working towards developing therapies and treatments. By participating in research opportunities, families can ensure that their voices and experiences are included. There are a number of opportunities available to MSD families, some of which are supported and maintained by the United MSD Foundation, while others we have funded and are conducted by our partners around the world.
United MSD Foundation Biobank
In conjunction with Genetic Alliance, the United MSD Foundation houses biological specimens (blood and urine) in Fredrick, 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.
Patient Registry
The Patient Registry captures longitudinal health information about patient and family experiences through the use of online surveys. Utilizing an online platform, families affected by MSD are able to create accounts, share their medical records, and complete surveys.
Natural History Study
All MSD patients are able to contribute their data to the ongoing Natural History Studies through the Children’s Hospital of Philadelphia (CHOP) and the University of Göttingen in Germany. Interested participants must first request to join the study by filling out this form. After submission, a member of the CHOP research team will reach out to you with more information.
Let’s Connect
Connect with MSD families and get valuable information from medical researchers and doctors.