The Duchenne Registry is designed as a longitudinal (long-term) research study, collecting information from the same people about the same topics over time. Data entered at one point in time is just that – a single snapshot of a person’s health experiences.

Over time, a person’s experience can start to look a lot different than their older snapshots: people develop new symptoms and receive new therapies. Families may grow or move. Providing new snapshots ensures that each person’s NOW is reflected in community research.

Updating your data in The Duchenne Registry helps researchers: 

• Understand new therapies.
• Track care practices.
• Plan and recruit for clinical trials.

All participants of The Duchenne Registry are encouraged to update their data every year – your NOW matters! 

More about participating in The Duchenne Registry

• Join The Duchenne Registry if you are not yet participating. Read more here.
• Stay up to date: Treat the Registry like a research study with annual visits. Set reminders and follow study notifications to complete data over time.

Contact the Registry team at coordinator@parentprojectmd.org if you need any help.