Establishing Clinical Standards for a Rare Disease

Seeking treatment for a rare disease can be complicated by the poor understanding clinicians may have of a given condition and variations in the way they diagnose, treat, and monitor a specific disease. One way to ensure patients receive the best care is through the implementation of clinical standards. We spoke to Kathi Kinnett, vice president of clinical care for Parent Project Muscular Dystrophy, about the process of establishing clinical standards for a rare disease, the role patients should play in that process, and what steps can be taken to ensure that clinics adhere to them.