National Registry of Myotonic Dystrophy & FSHD Patients and Family Members

The most well-described symptoms of a disease are not always those that have the greatest impact on people living with the disorder

posted on August 6, 2012 - 6:00am
Traditionally, outcome measures — the observations investigators make in a clinical trial to decide whether one treatment is better than another or better than a placebo — are determined by factors in a disease that are considered important by physicians and other professionals. But in recent years, there has been increasing interest in finding out what matters most to people with the condition...

New content is being added every day. Please check back again.