This past year has brought many new and exciting changes to DuchenneConnect, the robust and cutting-edge registry and resource that connects Duchenne and Becker patients with actively recruiting clinical trials and research studies, and educates patients and families about Duchenne and Becker research. The registry, which was established in 2007, has matured beyond a standard registry and into an innovative resource for the entire Duchenne and Becker community. This 2013 Annual Report (PDF) highlights how we have grown and expanded our services over the past year.
Registry Growth and Enhancement
The most significant event of 2013 was being awarded funding from PCORI, the Patient-Centered Outcomes Research Institute. DuchenneConnect will be one of 29 members of PCORnet, the National Patient-Centered Clinical Research Network. The goal of PCORnet is to create a large, highly representative, national network for conducting clinical research. You can read more about PCORnet in a recent Washington Post article.
The PCORnet program allowed us to add Ann Lucas, a genetic counselor with many years of experience caring for families with neuromuscular disorders, to our Registry team. We are collaborating with Geisinger Health System and UCLA, and we will continue to work with PatientCrossroads, who developed our registry platform. We’ll also work closely with the other Networks to make the most of this opportunity. This PCORI award will allow us to make DuchenneConnect an even stronger community resource!
Free Genetic Testing
Another highlight for DuchenneConnect in 2013 was our partnership with Sarepta Therapeutics to develop the Decode Duchenne Genetic Testing Program. This program, the first of its kind for Duchenne and Becker patients, provides genetic testing at no cost to patients who have not been able to access testing due to financial barriers.
If you or someone you know needs genetic testing for Duchenne or Becker, please visit the website to print the application form. This is a great program and a rare opportunity to be able to offer patients FREE genetic testing! We anticipate that we will have funds for genetic testing through 2014.
Increased Recruitment Efforts for Clinical Trials & Research Studies
When DuchenneConnect was launched, one of the main goals was to connect patients with actively recruiting research studies and clinical trials. In 2013, we recruited for almost twice the number of clinical trials and research studies as 2012. We assisted with recruitment for 12 clinical trials and 10 research studies. This is wonderful news for everyone registered in DuchenneConnect. We hope you feel that the time and effort you put into the registry pays off through the information and connections you gain through the registry.
There has never been a better time to be involved in DuchenneConnect! If you are not already registered, we encourage you to register today at DuchenneConnect.org. If you are already registered, please login to your account and update your/your child’s medical history.
If you have any questions or concerns, please email us at Coordinator@DuchenneConnect.org or call 201-937-1408, Monday – Friday, 8am – 5pm EST.
The DuchenneConnect Team at Parent Project Muscular Dystrophy -
Holly Peay, MS, CGC, Ann Martin, MS, CGC, and Ann Lucas, MS, CGC