This year has been one for the record books for many reasons, but here at PPMD we are excited to celebrate one year of data collection in The Duchenne Registry’s new smartphone app platform!

Our app launched last November, providing you with direct access to the Registry in the palm of your hand, so you can update your data whenever it is most convenient and top-of-mind for you.

The data you enter into the Registry is incredibly valuable and is used in many ways to advance research and treatments for Duchenne. We are so thankful for all of you who have downloaded the app and shared your data with us!

Snapshot of some of the data we have been collecting this year:

Number of Registrants Providing Data through The Duchenne Registry App: 1,086
(as of 11/30/2020)

• 39% are brand new registrants and 61% are legacy registrants who transitioned from our previous web platform.
• The total number of ALL registrants is over 5,500! This includes our legacy registrants from our web platform as well as everyone participating in the new app.

Total App Registrants Who Completed ‘About Me’ Survey: 746
(as of 11/30/2020)

The majority of registrants (73%) providing data through the app have Duchenne:

A wide age range is represented in the Registry app:

Registrants from 56 countries have joined the app, but the majority (71%) are living in the United States:

Total Number of Surveys Completed in App: 7,039
(as of 11/30/2020)

This bar graph shows the total number of completed surveys for each survey type within the Activities section of the app:

How do these numbers compare to previous years in our web-based platform?

• The total number of brand new registrants (424) this past year is slightly higher than the annual average (400) of new registrants into our web-based platform over the previous ten years (2009 – 2019).
• Although the number of new registrants is similar to previous years, the total number of surveys completed this past year in the app is significantly higher than previous years:

Increased Community Engagement

We are thrilled to see this increased engagement – over 2,000 more surveys were completed this year in our app compared to previous years! We believe this increased engagement – a nearly 50% increase – is due to the ease of use of the new app. Literally having the app in the palm of your hand makes completing surveys and updating your information easier than ever before! Several parents have commented that they would “definitely recommend” the app to others, and that is was “easy to use,” and the “questions and answers were simply stated and easy to understand.”

We have also received feedback about what you would like to see in the app, and we are working to release several new features in 2021, so please stay tuned!

What are we doing with the Registry data?

The data entered into the Registry is incredibly valuable and is used in many ways to advance research and treatments for Duchenne.

• In 2020, we have had 7 requests from researchers for our Registry data. Please remember that we only share de-identified data, so none of your personal identifiers (such as name, DOB, email address) are shared.
• We have also used the Registry to assist with recruitment for 10 research studies so far in 2020.
• Learn more about all of the publications that have used the Registry data.

Not in The Duchenne Registry App?

If you have not yet joined the Registry and have questions about why you should join, please watch our short video that explains the benefits of joining the Registry, and read our App Q&A. If you participated in our Registry through the web platform and have questions about transitioning to the app, please contact us so we can help you.

Schedule time with a PPMD Genetic Counselor

Do you have questions about joining the Registry? Please reach out to PPMD’s genetic counselors – we are here to help you!

• Email us at coordinator@duchenneregistry.org.
• Call us at 888-520-8675. We are available Monday – Friday, 8am – 5pm EST.
• Or click the Calendly link to schedule a time that is convenient for you. Enter your phone number, and one of our genetic counselors will call you on the specified date and time.

Thank You!

Thank you for a great first year in The Duchenne Registry App! YOUR data is critical in our fight to end Duchenne!

Join The Duchenne Registry >