Nonprofit Integrates EHR Data into Duchenne Registry for Clinical Research

Parent Project Muscular Dystrophy (PPMD), a nonprofit organization working to end Duchenne muscular dystrophy (Duchenne), has launched a study that will combine patient reported outcomes data with EHR data to help advance clinical research.  

PPMD's study will extract data from several of the organization's Certified Duchenne Care Centers (CDCCs) across the country.

PPMD will securely send data from consented patients' health records to its Duchenne Outcomes Research Interchange, a patient- and clinician-reported data warehouse. The Interchange will combine EHR data with data from The Duchenne Registry and information 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," Ann Martin, MS, CGC, PPMD's vice president of community research & genetic services, said in a public statement.

"As a new therapeutic landscape emerged, we saw a clear need to combine PRO data with clinician-reported outcomes data," Martin continued. "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 launched the Interchange in 2018 with Prometheus Research (an IQVIA company). Data is stored securely and follows industry standards and patient privacy laws.

"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," said Megan Freed, MPH, PPMD's director of data and technology Strategy. "It is faster and more efficient for everyone, with less possibility for errors."

Over the coming years, PPMD will invite all CDCCs within its network to participate in the EHR study. Providers at participating CDCCs will ask patients 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, including diagnosis, medications, laboratory tests, and procedures.