A key goal of the Myotonic Dystrophy Family Registry (the “Registry”) is to aid clinicians, pharmaceutical companies and researchers in developing new, effective treatments for myotonic dystrophy. By joining the Registry, researchers and other professionals can access de-identified aggregate data to identify target populations for study planning or recruitment for research studies and clinical trials. Registering a profile also provides access to explore the database and use the Registry’s data analysis and report capabilities to learn more about DM and the community of people living with it. The Registry Coordinator is also available to review draft recruitment notices and advertisements on behalf of the myotonic dystrophy community to offer feedback regarding content and language.
REGISTRY DATA AND CURATION
The Registry makes de-identified data gathered from Registry members available to the DM community of registered participants, families and researchers, in the hope that this data will support breakthroughs and expedite clinical trials that could lead to better treatments and care management.
The Registry curates the clinical and genotypic information submitted by each participant. Curation is an ongoing and continuous process; however, searches of the Registry will include all curated and uncurated data provided by Registry members. Specific details of curation can be discussed with the Registry Coordinator, and may be used to refine such searches. Only completed profiles are included in searches of the Registry database.