Many of you have probably noticed the new “look and feel” of The Duchenne Registry (previously DuchenneConnect) – see the end of this blog for a list of some of the new features!
In honor of our 10 year Registry anniversary, and in response to informative feedback from you, we have been making several positive changes to bring the Registry to the next level—reflecting both the ongoing evolution of scientific progress in Duchenne and enhancements to the site that reflect your suggestions.
To date, our community has enabled incredible progress because of your participation in the Registry including:
- Recruiting for 65 clinical trials in Duchenne
- Providing data to the FDA about the natural history and patient preferences for treatments
- Informing payer decisions to enable access to approved treatments
But we’ve often asked ourselves,
- How could we improve the Registry to make it more patient- and family-friendly? Providing a tool that would not only enable drug development and access but would also improve the complexities of organizing care and tracking outcomes.
- What if we could aggregate both patient-reported data/outcomes (PROs) with clinician-reported data/outcomes (CROs), while strengthening the current data set to improve care and speed the direction of all treatments?
- How do we strengthen our forward momentum and encourage you, our community of citizen scientists, to come back to update your accounts and take your rightful seat at the drug development table?
We’re on the precipice of answers, and eyeing even greater improvements to The Duchenne Registry in 2019.
We envision that the next iteration of the Registry we are preparing to launch will aggregate multiple kinds of data—from patients, from clinicians, and eventually, from electronic health records and claims data. We envision an engaging and responsive Registry platform that is easy to access, navigate, and update. A platform that will make your day-to-day life with Duchenne a little easier, with features like appointment reminders and easy access to your medical records.
How will we do this? By bringing together the leading talent and technology, working collaboratively with industry partners, and building from our 10 years of patient-powered data.
We will keep you updated as we know more, but right now, it is more important than ever to continue your engagement in The Duchenne Registry. If you have not visited our new site recently, please visit today! If you are not yet registered, please join today. If you are already registered, please login and update your account.
New Registry features to check out now:
- Homepage– Scroll down to see our impact numbers, including the total number of registrants and countries represented in real time!
- Reports– Under Reports on the top menu bar, click on Publications to see a list of all publications using The Duchenne Registry data, with a short summary of the article and links to all full articles.
- Medication Module– On the right hand side of your Dashboard you’ll see the new Medication Module where you can enter all the medications and supplements that you/your child are currently taking. This is extremely valuable data for research!
- Clinical Trials– Also on the right hand side of the Dashboard, you’ll find a new module called Clinical Trials. Click on this tool to see a list of trials that you/your child may be eligible for based on your age, gender, diagnosis, and location. This information is pulled directly from ClinicalTrials.gov.
- View Data– Once you have completed one or more Medical Surveys, you can click on View Data on your Dashboard (see list of Completed Surveys at bottom of Dashboard to find the View Data link). The View Data pages allow you to see how you/your child compare to others in the Registry. The graphics on the View Data pages are in the process of being updated to bring you better visualization of your data.
Please call 888-520-8675 (option 2) or email firstname.lastname@example.org and one of the Registry genetic counselors will answer your questions.Visit The Duchenne Registry