PPMD’s Electronic Health Record (EHR) Study is a research study that shares clinical data from a patient’s clinical visits in the electronic health record (EHR) with PPMD.
By sharing this information, it will help clinicians improve and refine the standards of care, and help researchers learn more about Duchenne so treatments can be developed faster.
An additional goal is to combine this EHR data with patient-reported data from The Duchenne Registry in one central place, PPMD’s Duchenne Outcomes Research Interchange.
PPMD’s Duchenne Outcomes Research Interchange (“the Interchange”) is a patient- and clinician-reported data warehouse which can combine data from The Duchenne Registry with Electronic Health Record (EHR) data, as well as data provided by industry partners with approved therapies. By combining this data in one place, we will have a more complete picture of Duchenne and Becker muscular dystrophy, allowing researchers and clinicians to improve care and develop treatments faster.
PPMD launched the Interchange in 2018 with Prometheus Research (an IQVIA company), an industry leader in health data informatics. All data is stored securely and in accordance with strict industry standards and patient privacy laws. In addition, the EHR data is encrypted while being sent and stored for enhanced security. The Interchange will only allow data to be used for research purposes and to improve care guidelines for Duchenne and Becker patients.
To be included in PPMD’s Electronic Health Record (EHR) Study, patients must:
Patients do not need to be registered with The Duchenne Registry in order to participate in the EHR Study. However, if you are a member of The Duchenne Registry, your EHR data may be combined with your Registry data in the Interchange. Together, this information can help create a more complete picture of Duchenne and Becker muscular dystrophy, allowing clinicians and researchers to improve care and develop treatments faster.
If your CDCC is participating, you will be invited to join the study during a clinic visit or over the phone in the future. PPMD anticipates 3-7 more Certified Duchenne Care Centers will join the EHR Study each year over the next few years.
PPMD’s Electronic Health Record (EHR) Study is collecting your clinical information directly from your clinic’s EHR. All you have to do is provide your permission (consent) for your EHR data to be securely shared with PPMD.
The Duchenne Registry is PPMD’s patient-report registry. All the information is collected from you via surveys you complete in the Registry App.
These data sources fit together like puzzle pieces to create a more complete picture of the natural history of Duchenne and Becker muscular dystrophy.
Collecting data directly from the electronic health record (EHR) uses advanced technology 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.
PPMD has always recognized the value of the patient voice. In order to understand Duchenne as a whole, it is important that we continue to capture the patient experience directly from patients and their caregivers through The Duchenne Registry, as we have done since 2007.
Your “common clinical” health information will be shared with PPMD for this study. This includes things like your age, race, gender, health conditions, medicines, vital signs, lab results and medical procedures. Retrospective (past) data going back ten years will be shared with PPMD, as well as all prospective (future) data. The EHR data will continue to be shared until the study ends or you withdraw from the study.
Yes. PPMD works with a company called Prometheus Research (an IQVIA Business) to ensure your information is securely sent from the CDCC to the Interchange. Prometheus are leaders in health data security. They make sure all health data shared with the Interchange stays protected and private. The Interchange is secure and will only allow data to be used by researchers and to improve care guidelines for Duchenne and Becker patients.
When clinical information is shared directly from patients’ electronic health records into PPMD’s Duchenne Outcomes Research Interchange, researchers can better understand Duchenne and Becker. The more data we have in one place, the more complete picture we have to help improve care guidelines for Duchenne and Becker. More information also will help researchers speed the development of therapies and treatments for Duchenne and Becker.
If you attend a Certified Duchenne Care Center, your center will ask you to sign up during a visit or over the phone once the study is activated at the site.
Your clinic team member will go over the consent form with you /your child and you will have time to read it and ask questions before signing. Electronic health record (EHR) data will only be pushed for those patients who sign the consent form. Once you sign the consent, there is nothing more you need to do. Your EHR data will continue to be shared until the study ends or you withdraw from the study.
Like all research studies, your participation in PPMD’s EHR Study is your choice. If you choose not to participate, information from your EHR will not be shared with PPMD.