The Duchenne Registry, known as “the world’s largest repository of patient-reported data on Duchenne muscular dystrophy,” is celebrating its 10th anniversary this month.
The registry currently houses information on 4,200 people from more than 100 countries who have Duchenne or Becker muscular dystrophy, conditions that typically affect males. The registry also includes female carriers.
Parent Project Muscular Dystrophy (PPMD), a non-profit group headquartered in Hackensack, N.J., launched the registry in May 2008.
In a news announcement of the anniversary, PPMD founder Pat Furlong noted advances in treating muscular dystrophy since she founded PPMD in 1994. When the organization began, Furlong said, “The mean age of death was still in the late teens. Since then, we’ve seen a 10- to 15-year increase in life spans, with care optimization being the biggest reason for this result.”
Pharmaceutical companies developing treatments for muscular dystrophy have used the registry to find candidates to participate in clinical trials. So far, about 60 clinical trials have used the registry as a recruitment tool.
To mark the registry’s milestone anniversary, PPMD said the registry’s Web site has been upgraded with additional tools and functions, including a new dashboard that includes “the medications module which will be critical in this new era of approved Duchenne therapies.”
The new Web site will still allow families to upload medical records, add information on healthcare providers and family members, and access board-certified genetic counselors who focus on Duchenne MD.
Upcoming functions will include the ability for parents to compare their child’s data with other data from people in the muscular dystrophy community.
