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Research Study Alert: Noninterventional Study in People with DMD and BMD

By Sujatha Gurunathan Thursday, January 11, 2024

Study Coordinators at CureDuchenne Link® are seeking individuals living with Duchenne or Becker muscular dystrophy (DMD or BMD) or carriers to participate in a noninterventional study. The objective of this study is to facilitate data sharing of participant reported data and biosamples to accelerate research for new treatments and a cure. The collected longitudinal (over time) data provides researchers insight into the disease progression over time in individuals to gain a better understanding of the course of DMD/BMD and to identify biomarkers and targets of therapy.

This study does not involve an intervention and does not exclude individuals currently participating in other studies or trials. Once every year, enrolled participants will be required to complete an online questionnaire and can choose to donate blood or urine as well as consent to medical record collection. The duration of participation is at the discretion of the participant and can be paused at any time.

To be eligible, individuals must meet the following inclusion criteria:

  • Must be 4 weeks old or older
  • Confirmed diagnosis of having Duchenne or Becker MD or a carrier
  • Must speak English or Spanish
  • Must receive care/be a resident in the US or US territories

Individuals may not be eligible to participate if they meet the following exclusion criteria:

  • Prisoner
  • Ward of the state

Please visit this link for the full listing of inclusion and exclusion criteria.

To learn more or inquire about participation, visit the study website or contact the Study Team by email: support@cureduchennelink.org.

Disclaimer: No content on this site should ever be used as a substitute for direct medical advice from your doctor or other qualified clinician.