The first patients have agreed to share their clinical data with the electronic health record (EHR) study, according to a release from the Parent Project Muscular Dystrophy (PPMD).
The goal of the study is to help clinicians and researchers improve care and learn more about Duchenne and Becker muscular dystrophy.
Health record data will be sent securely to PPMD’s Duchenne Outcomes Research Interchange (or Interchange), a repository that combines patient-reported information from the Duchenne Registry with EHR data collected directly from the clinic. Industry partners who have approved therapies also contribute data.
“Recent advances in technology around shared data have enabled PPMD to combine these datasets within a centralized data exchange that will benefit the entire community, from patients to clinicians and scientists researching therapeutics and treatments,” Ann Martin, a certified genetic counselor and PPMD vice president of community research and genetic services, said in a news release. “The PPMD Interchange provides this central repository for all types of Duchenne and Becker data and ‘real world evidence’ to be collected and analyzed.”
Searching for the most complete dataset on Duchenne and Becker muscular dystrophies
Duchenne and Becker are the most common types of muscular dystrophy, causing progressive muscle weakness.
PPMD works to accelerate research and ensure access to optimal health care and approved cutting-edge therapies for all patients. The organization launched Interchange in 2018 with health data informatics company Prometheus Research (part of IQVIA). All data collected is stored in accordance with industry standards and patient privacy laws, and the repository ensures that the information is used only for Duchenne and Becker research and for better care.
Once a patient consents to join the EHR, data is automatically collected from physician visits without additional burden on patients and families. Data shared includes information about diagnosis, health status, laboratory tests, medical procedures and medications. Retrospective information will be collected and prospective data will be shared until the study is completed or the patient withdraws.
“Collecting data directly from EHRs takes advantage of recent advances in health data interoperability, positioning patient advocacy groups to collect data more easily without requiring either the clinician or the patient to enter the data themselves,” said Megan Freed , PPMD director of data and technology strategy. “It’s faster and more efficient for everyone, with less room for error.”
Although patients are not required to be registered in the Duchenne registry, the ultimate goal is to have this data included in the exchange, creating the most complete data set for Duchenne and Becker muscular dystrophies.
These data sources fit together like puzzle pieces to create a picture of the disorders, said Pat Furlong, founder and CEO of PPMD.
“The Duchenne registry remains a critical tool in Duchenne research because it will always be important to get information directly from patients about how they feel and what they can do,” Furlong said. “And now, powered by 15 years of robust data thanks to our amazing community, it’s ready to expand and evolve. With the addition of EHR data, the PPMD exchange will provide a more complete picture of Duchenne and Becker, allowing researchers and clinicians to improve care and develop treatments faster.”
Arkansas Children’s Hospital is the first certified center to participate in the study
Arkansas Children’s Hospital is the first Certified Duchenne Care Center (CDCC) to participate, and several centers are in the process of joining the EHR study later this year, according to PPMD.
“As physicians treating patients with Duchenne and Becker, the more information we have about this rare, multisystem disease, the more informed decisions we can make about clinical care,” said Aravindhan Veerapandiyan, MD, assistant professor of pediatrics at the University of Arkansas for medical sciences. “Being able to view in Interchange population-level data from our clinic compared to other Duchenne and Becker clinics in the CDCC network is incredibly valuable to the advancement of science.”
PPMD plans to invite all CDCCs in its network to participate in the EHR study. Patients at these centers will be invited to join the study during an upcoming clinic visit or by phone.