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Muscular Dystrophy Study Begins Extracting EHR Data

Parent Project Muscular Dystrophy, a nonprofit organization leading the fight to end Duchenne muscular dystrophy, has launched an Electronic Health Record (EHR) Study with the first patients consented to participate.

PPMD’s EHR Study will extract data from several of the organization’s Certified Duchenne Care Centers (CDCCs) across the country to collect clinical data to inform research and care without adding additional burden on patients and families. Arkansas Children’s Hospital is the first CDCC to participate, with several more CDCCs in the process of joining PPMD’s EHR Study later this year.

As part of the study, data from consented patients’ health records will be securely sent to PPMD’s Duchenne Outcomes Research Interchange, a patient- and clinician-reported data warehouse that can combine EHR data with data from The Duchenne Registry, as well as data provided by industry partners with approved therapies.

“For the last several years, PPMD has been expanding and enhancing The Duchenne Registry, our comprehensive patient-reported outcomes (PRO) registry for Duchenne and Becker muscular dystrophy, said Ann Martin, M.S., PPMD’s vice president of community research & genetic services, in a statement. “As a new therapeutic landscape emerged, we saw a clear need to combine PRO data with clinician-reported outcomes data. Recent advances in technology around shared data have enabled PPMD to combine these data sets within a centralized data interchange that will benefit the entire community – from patients, to clinicians and scientists exploring therapeutics and treatments. PPMD’s Interchange provides this central repository for all types of Duchenne and Becker data and ‘real world evidence’ to be collected and analyzed.”

PPMD launched the Interchange in 2018 with Prometheus Research (an IQVIA company), health data informatics company. PPMD stressed that all data is stored securely and in accordance with strict industry standards and patient privacy laws. The Interchange will only allow data to be used for research purposes and to improve care for Duchenne and Becker patients.

In an effort to collect clinical data without adding additional burden on patients and families, once a patient consents to participate in PPMD’s EHR Study, the study will automatically collect information from doctor visits and send it to the Interchange. “Collecting data directly from the EHR capitalizes on recent advances in health data interoperability, positioning patient advocacy groups to gather data more easily, without asking either the clinician or the patient to enter the data themselves. It is faster and more efficient for everyone, with less possibility for errors,” said Megan Freed, M.P.H., PPMD’s director of data and technology strategy, in a statement.

“As physicians treating Duchenne and Becker patients, the more information we have about this rare, multi-system disease, the more informed decisions we can make about clinical care. The ability to view in the Interchange population-level data from our clinic compared to other Duchenne and Becker clinics in the CDCC Network is incredibly valuable to advancing the science,” said Aravindhan Veerapandiyan, M.D., an assistant professor of Pediatrics in the University of Arkansas for Medical Sciences (UAMS) College of Medicine, in a statement. Veerapandiyan practices as a child neurologist at Arkansas Children’s Hospital and directs the Certified Duchenne Care Center / Dystrophinopathy Clinic for children with Duchenne and Becker muscular dystrophies.

While patients do not need to be registered with The Duchenne Registry to participate in PPMD’s EHR Study, the ultimate goal is to combine this data within the Interchange, building the most comprehensive dataset on Duchenne and Becker muscular dystrophy.

Over the coming years, PPMD will invite all CDCCs within its network to participate in the EHR Study. Patients who attend participating CDCCs will be invited to join the study during an upcoming clinic or phone visit. If the patient consents to participate, the clinic will securely push data from the EHR to the Interchange. The data will include diagnosis, medications, laboratory tests, and procedures. Retrospective data will be pushed, and all prospective data will be pushed until the study ends or the patient requests to be withdrawn from the study.


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