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.
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.
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 firstname.lastname@example.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.
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
The Christopher Project
REPORT TO THE MYOTONIC
is available now.