Help overcome the barriers to early diagnosis of Duchenne MD

On behalf of myself and my team, I would like to invite you to participate in a research project funded by the Centers for Disease Control and Prevention (CDC) through the Association of American Medical Colleges. The goal of this project is to develop education materials for healthcare providers to promote the early diagnosis of Duchenne and Becker Muscular Dystrophy. The educational materials will be based on your experience and the experiences of others who have worked with patients with Duchenne and Becker Muscular Dystrophy (DBMD).

To this end, the project hopes to gather information about how Pediatricians, Neurologists, and Physical Therapists identify patients who may have DBMD and how the child is evaluated when he is suspected of having this rare disease. Preliminary research has shown that children with DBMD show signs and symptoms on average at about two and a half years old but are not diagnosed until nearly five years old. This gap between the time at which preliminary signs and symptoms are observed and the time at which a diagnosis is made ignited our interest to learn about healthcare provider experiences with this disease.

As a healthcare provider, we are eager to know about your experiences. We would like you to participate in our research project by sharing your experiences as a healthcare provider. You may help identify common obstacles which preclude children with Duchenne and Becker Muscular Dystrophy from being diagnosed early and possibly benefiting from new medications and treatment guidelines. The phone interview will last approximately 30 minutes.

If you would like to contribute to our project by sharing your experiences with us, please enter your contact information below. Interviews will be conducted from Monday September 21st 2009 to Friday January 8th 2010. If you have a preferred phone contact number (home, office, or cell) or an office manager who you would prefer we contact to schedule an interview, please let us know.

Sincerely,
Asst. Prof. William (Andy) Faucett M.S., C.G.C.
Principal Investigator
Office: 404-778-8420
Email: andy.faucett@emory.edu

Charles Wigington M.S.P.H.
Research Project Coordinator
Office: 404.778.3213
Email: cwiging@sph.emory.edu