Recently the MDF (Myotonic Dystrophy Foundation) announced the launching of a new patient registry. This registry looks very exciting and apparently will be some kind on interactive database. The database will help both patients and researchers. The patients will benefit by hopefully more easy access to clinical trials that will be starting soon. Researchers benefit by reducing the cost of finding and identifying patients with DM. Click here for the announcement from the MDF Here is the new logo for the Registry
Make sure to sign up for this registry when it is available later this month
The study looked at PRISM-1 for “patient-reported impact of symptoms in myotonic dystrophy type 1″ — was conducted in two parts. What was surprising is that Fatigue and mobility are the two items that affect Dm1 patients the most.
Phase 1 involved interviews with 20 people age 21 or older with adult-onset MMD1. (People with congenital- or juvenile-onset MMD1 were not included in this study. These diseases have separate symptoms, onsets, and progression paths)
In the interviews, people were asked to identify the symptoms of DM1 that have the greatest effect on their lives. Recurring similar comments were grouped to identify 221 important DM1 symptoms, which the investigators then divided into 14 themes. All 20 people who were invited to participate in this phase did so.