OVERVIEW

The Christopher Project is an important research initiative designed to provide insight into the experience of patients and families living with myotonic dystrophy. It is a partnership between national patient advocacy organizations, health care providers, and people living with myotonic dystrophy. The project was designed to complement existing research by asking patients and their families about their own experience from their own perspective, as experts in their own right.

Over 4,000 surveys were distributed to patients covering a broad range of topics. A follow-up survey was then distributed to 1,000 family members/caregivers to gain additional insight.

Survey responses from over 1,500 individuals were entered into an extensive database for analysis. The results have been compiled into a comprehensive report.

THE REPORT

The Christopher Project Report to the Myotonic Dystrophy Community is a valuable source of information. It includes summary findings of the project along with a detailed description of the diagnostic experience, symptoms, daily life challenges, and healthcare experiences of patients and family members/caregivers.

Full-color printed copies of the 80-page report are available by mail. Please email support@christopherproject.org to request your paper copy.

You can also download a PDF copy here.