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The Christopher Project is a collaborative research initiative between national patient advocacy organizations, health care providers, and people living with myotonic dystrophy. It was designed to complement existing research by asking patients and their families about their own experiences from their own perspective, as experts in their own right.

To accomplish this, 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 were received from over 1,500 individuals. Their survey data was entered into an extensive research database for analysis. The results of this analysis have been compiled into a comprehensive and informative report: The Christopher Project Report to the Myotonic Dystrophy Community.

The Christopher Project Report to the Myotonic Dystrophy Community is a valuable source of information for anyone living with myotonic dystrophy. 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 final report are being mailed to patients, family members/caregivers, and health care professionals free of charge. Request your copy.

A Data Supplement is available that contains approximately 600 frequency tables summarizing all of the anonymized survey data. Click here to view the Data Supplement.

Access to raw data for research purposes is available to qualified investigators subject to a formal application and review process. Data access inquiries should be directed to the Project Coordinator at support@christopherproject.org.

Click here to view a reference copy of the original Patient Survey.

Click here to view a reference copy of the original the Family Member/Caregiver Survey.

Some of the results of the Christopher Project have been published in the scientific journal Muscle & Nerve:

Hagerman KA, Howe SJ, Heatwole CR; Christopher Project Reference Group. The myotonic dystrophy experience: a North American cross-sectional study. Muscle Nerve. 2019 Jan 24. doi: 10.1002/mus.26420. Available at: https://rdcu.be/bkhuf