Science That Changes Lives

Frequently Asked Questions

• What was the purpose of the MOVR registry?

  MDA’s mission is to empower the people we serve to live longer, more independent lives. MDA launched the Neuromuscular Observational Research (MOVR) Data Hub study to help achieve this mission. About 10 years ago, MDA recognized that there was a significant data shortage in the neuromuscular disease space and started crafting strategic approaches to accelerate data collection and its use by researchers, clinicians, and drug developers. One strategy that was identified was to leverage the MDA Care Center Network. Capturing these data across the MDA Care Center Network is providing valuable knowledge on disease progression for drug development and will serve as a rich source of real-world data in regulatory submissions and post-approval processes. The objectives for MOVR include enhancing disease understanding, accelerating drug development and optimizing health outcomes for our neuromuscular community.

• Why did we decide to close MOVR?

  We decided to close MOVR to take advantage of advancing medical technologies. This change will help us engage with the patient community and give back more effectively.

• What happens to my data?

  Since the MOVR registry has officially closed, your data is no longer being collected. Your enrollment has been deactivated on your behalf. The data previously collected through the MOVR registry will stay with MDA and your Care Center clinician for the research purposes outlined in the consent form you signed upon enrollment.

• Can I request my own data that was collected through MOVR?

  Yes! You can request your MOVR data at any time by emailing MDAMOVR@mdausa.org and we'll be able to send you your data in an encrypted Excel file.

• What is MOVR 2.0 and how is it different from MOVR?

  The original MOVR registry collected data manually, which was very time-consuming for hospital staff. MOVR 2.0 will use AI technologies to import medical records and work with a trusted partner to bring all the data together so it can be used for research and immediately provide customized visualization dashboards directly to you, the participants. This will reduce the burden on hospital staff and allow participants to have more involvement in research into their individual diseases and medical records.

• When will MOVR 2.0 launch?

  We will be running a pilot program for MOVR 2.0 to see if this direction fits the needs of MDA and the patient community. The pilot is aiming to launch in 2025. If you’d like more information on how to participate, please email MDAMOVR@mdausa.org.

• How will MOVR 2.0 benefit patients?

  In MOVR 2.0, we are focused on giving back to the community. Patients will now be able to enroll directly, without needing to go through a hospital team. Once enrolled, they’ll have access to a secure online account where patients will be able to select any medical provider they’ve seen (past or present) which will allow us to upload their medical records to a private customized dashboard for them to review at any time. Patients will soon have full access to their own patient dashboard, providing them with data reports, multiple ePROs, and various charting capabilities among other intriguing benefits.

• How can patients participate in the MOVR 2.0 pilot study?

  We will run a pilot program for MOVR 2.0 towards the end of 2025 / early 2026. If you are interested in participating, please email us at MDAMOVR@mdausa.org. We will also be sending out emails with more information and links to enroll.