Last week MDF mailed over 1,000 surveys to a sampling of community members as part of the Christopher Project. The Christopher Project is a collaborative research effort aimed at developing a shared understanding among patient advocacy organizations, clinical research centers, and patients and family members of the complex medical needs of DM1 and DM2 patients.
The survey explores patient perspectives about living with myotonic dystrophy in hopes of addressing the obstacles and barriers that impact patients’ ability to engage and get the care and support they need. Survey results are expected to shed light on why and how some families seem to do better at managing DM, while others seem to struggle.
MDF and other patient advocacy organizations and medical centers serving DM patients and their families are working together on this important outreach to the DM community. The information gathered will provide valuable insight to organizations like MDF, helping us to improve programs and services that support our community. The project will amplify information captured through expert, clinically driven research regarding clinical outcomes, access to care and care quality.
Armed with information, awareness and an action plan, the Christopher Project hopes to improve the lives of patients and families affected by DM. As soon as the data has been analyzed and published we’ll be certain to share the information with the MDF community.
If you are a member of another organization that serves DM patients, you may receive more than one survey as participating groups did not share contacts in order to protect patient and member confidentiality. If you get more than one survey, please pass a copy to someone else in your family living with myotonic dystrophy.
If you have any questions regarding the survey, please contact the Christopher Project at (855) 506-4646 (toll free) or firstname.lastname@example.org. You can also call MDF at (866) 968-6642.