by: Parent Project Muscular Dystrophy
PPMD is thrilled to announce that DuchenneConnect is now The Duchenne Registry. We recently reached a significant milestone of collecting 10 years worth of patient-reported data, and YOU have made this possible! Thank you for participating in The Duchenne Registry and helping to strengthen the power of this network!
The Duchenne Registry is widely considered the go-to patient registry for researchers and clinical investigators in the Duchenne space. With two drug approvals in the U.S. for Duchenne, The Duchenne Registry continues to provide important patient-entered data that advances research, improves care, and informs clinical trial design and regulatory agencies.
New Name, New Features
To mark the 10th anniversary of The Duchenne Registry, PPMD has implemented new features and tools to help enhance your experience.
New features include a more modern, streamlined homepage and website that is more fully integrated with the new PPMD website. In addition, once you log in to your registry account, you will experience a new, more interactive registry dashboard. A new feature on the dashboard is the medications module which will be critical in this new era of approved Duchenne therapies.
You will still find the same medical surveys to complete, and the same ability to upload medical records, add healthcare providers, track height and weight, and add family members. You will also continue to have direct access to PPMD’s board-certified genetic counselors who specialize in Duchenne. We are always available to answer your questions!
As always, information entered into The Duchenne Registry is kept confidential and secure. Invitae, the company hosting the registry platform, complies with important research and privacy regulations for protecting patient data. However, your de-identified data is shared with the community, including other registrants, researchers, and clinicians.
What’s Next?
The Duchenne Registry will continue to improve the user experience over the coming months.
New features planned for the Registry includes upgrading the “View Data” feature so you can view your data in a graphic-rich format and see how you or your child compare to others in the community. We greatly appreciate the time and effort spent by families inputting and updating their data, and a new section on the Registry dashboard (“Your Data at Work”) highlights the impact of your data. Efforts will also be made to make the inputting of data less burdensome to families.
In a post-approval landscape, The Duchenne Registry will also make several enhancements to the data collected so that industry partners can improve post-marketing surveillance of their products.
The Importance of YOU
This significant milestone would not be possible without the time and effort of hundreds and thousands of Duchenne and Becker families in our community. THANK YOU! The success of this registry is a direct result of community participation. By registering and entering your data, you are a citizen scientist and you are directly contributing to real scientific research, without ever leaving your home.
Learn more about The Duchenne Registry. If you are not already registered, please join, and if you are already registered, please visit our new website and update your account.
Questions? Please call The Duchenne Registry Coordinators at 888-520-8675 or email coordinator@duchenneregistry.org.
