In December, several team members of The Duchenne Registry attended the 2022 TREAT-NMD International Conference in Vancouver, Canada. The Registry has been a member of the TREAT-NMD neuromuscular network since we began collecting data in 2007. Being a part of this international network fosters collaboration among different countries and registries and enhances the power of your data.
As part of the conference, the Registry submitted a scientific poster for presentation entitled, The Duchenne Registry: We’ve Got an App for That. We analyzed the past three years of data collected through our app platform since it launched in November 2019. In addition, we compared the engagement levels in the app with the three previous years of data collection through our web platform.
The Duchenne Registry App
In 2019, the Registry transitioned to an app-based platform to increase ease of use for families. The app is currently collecting 15 surveys, covering the affected body systems, clinical trials, genetic testing, and pain. Since mid-2021, the app has also enabled participants to submit photographs of their genetic test reports, which are then curated by genetic counselors.
Here’s what we found
- Families participating in the Registry app were more likely to complete all of their medical surveys and submit their genetic test report compared to previous web platform users. This results in a more thorough understanding of those participants, which is important to better our understanding of Duchenne, Becker, and carriers.
- The total number of registrants was higher in the previous web platform, possibly due to technology limitations for some families as well as difficulties switching platforms.
Recognizing that having both a web and app platform may be ideal to give each participant the option of choosing a preferred platform, we are excited to also be launching a NEW web portal option for families this year. Stay tuned to learn more!
15 Years of Data Collection
The PPMD team is incredibly grateful for the families who have shared their Duchenne and Becker experience with The Duchenne Registry over the past 15 years. In honor of this incredible milestone, we are compiling a 15-Year Registry Report which will summarize the data we have collected over the years and highlight some insights we have gained from the data. In the meantime, below are some remarkable numbers summarizing the content of The Duchenne Registry.
Below are several numbers showing the impact of The Duchenne Registry over the past 15 years.
Thank you for for joining The Duchenne Registry and helping to advance research and treatments for Duchenne and Becker. If you are not yet a member of the Registry, please visit DuchenneRegistry.org and join today.Join the Registry
Please contact the Registry genetic counselors at firstname.lastname@example.org or 888-520-8675.