[{"data":1,"prerenderedAt":-1},["ShallowReactive",2],{"health-studies-list:{\"overallStatus\":[\"RECRUITING\",\"AVAILABLE\",\"NOT_YET_RECRUITING\"],\"leadSponsorName\":\"The Duchenne Registry\",\"orderBy\":\"LastUpdateSubmitDate:desc\",\"size\":25,\"offset\":0}":3,"health-study-condition:":68},{"pageToken":4,"total":5,"offset":6,"count":5,"results":7},null,2,0,[8,45],{"id":9,"slug":10,"hasResults":11,"nctId":12,"briefTitle":13,"officialTitle":14,"acronym":4,"eligibilityCriteria":15,"healthyVolunteers":11,"sex":16,"minAge":4,"maxAge":4,"enrollmentInfo":17,"targetDuration":20,"studyType":21,"phases":4,"briefSummary":22,"conditions":23,"keywords":28,"overallStatus":32,"whyStopped":4,"lastUpdateSubmitDate":33,"lastUpdatePostDateStruct":34,"startDateStruct":37,"completionDateStruct":39,"leadSponsor":41,"locationsCount":44},"100640890","duchenne-electronic-health-record-study-100640890",false,"NCT07609394","Duchenne Electronic Health Record Study","Duchenne Outcomes Research Interchange Data Enrichment Through EHR Extraction","Inclusion Criteria:\n\n* Duchenne or Becker muscular dystrophy or female carrier\n* Must be a patient at an institution that has an established EHR integration set up with PPMD's Interchange\n* Must provide consent to have their EHR data pushed to the Interchange and linked to existing Registry data, if applicable\n\nExclusion Criteria:\n\n* Individuals with other forms of muscular dystrophy\n* Individuals who do not provide consent\n\nIndividuals with Duchenne\u002FBecker who have severe mobility\u002Fstrength issues need to provide consent and participate with assistance from a caregiver. Adults with communication impairments and\u002For intellectual disabilities (considered the \"decisionally impaired\" group for purposes of this study) will be able to consent with the assistance of the adults who are designated Legally Authorized Representative (LAR). Without assistance, this group will be excluded from participation because the consent process.","ALL",{"count":18,"type":19},2500,"ESTIMATED","20 Years","OBSERVATIONAL","This study aims to collect retrospective and prospective, long-term data of patients with dystrophinopathy (including Duchenne, Becker, and female carriers) through electronic transfer. At select clinics across the United States, electronic health record (EHR) data from consented patients will be pushed into PPMD's Duchenne Outcomes Research Interchange (the Interchange), where the EHR data can be combined with patient-reported data from The Duchenne Registry. By combining this data in a central hub, we will gain a more complete picture of Duchenne and Becker muscular dystrophy, allowing researchers and clinicians to develop treatments faster and to improve and refine the standards of care for Duchenne and Becker. The ultimate goal is to optimize function, quality of life, and survival of Duchenne and Becker patients.\n\nEHR data collected will be fully identifiable retrospective data for core clinical data elements going back ten years (as available) from the date of consent; going back one year for retrospective clinical notes from the date of consent; and prospectively collecting both core clinical data elements and clinical notes. Information collected will align with the FHIR U.S. core data elements, also known as the Common Clinical Data Set.\n\nPPMD partnered with Prometheus Research (an IQVIA company), an industry leader in health data informatics, to launch both the EHR Study and the Interchange. All data is stored securely and in accordance with strict industry standards and patient privacy laws. Participation in the EHR data extraction is voluntary, and a patient can withdraw consent at any time.",[24,25,26,27],"Duchenne Muscular Dystrophy (DMD)","Becker Muscular Dystrophy","Dystrophinopathy","Dystrophinopathy Symptomatic Female Carrier",[29,30,26,31],"Duchenne","Becker","Muscular Dystrophy","RECRUITING","2026-05-21",{"date":35,"type":36},"2026-05-27","ACTUAL",{"date":38,"type":36},"2022-12-01",{"date":40,"type":19},"2072-12",{"name":42,"class":43},"The Duchenne Registry","OTHER",10,{"id":46,"slug":47,"hasResults":11,"nctId":48,"briefTitle":42,"officialTitle":49,"acronym":4,"eligibilityCriteria":50,"healthyVolunteers":11,"sex":16,"minAge":4,"maxAge":4,"enrollmentInfo":51,"targetDuration":53,"studyType":21,"phases":4,"briefSummary":54,"conditions":55,"keywords":58,"overallStatus":32,"whyStopped":4,"lastUpdateSubmitDate":59,"lastUpdatePostDateStruct":60,"startDateStruct":62,"completionDateStruct":64,"leadSponsor":66,"locationsCount":67},"100214523","the-duchenne-registry-100214523","NCT02069756","The Duchenne Registry: An International, Patient-Report Registry for Individuals With Duchenne and Becker Muscular Dystrophy (Member of TREAT-NMD Neuromuscular Network)","Inclusion Criteria:\n\n* Diagnosis of Duchenne or Becker muscular dystrophy; Manifesting female carriers and asymptomatic female carriers also included in registry.\n\nExclusion Criteria:\n\n* Diagnosis of any other type of muscular dystrophy (including limb-girdle muscular dystrophy).",{"count":52,"type":19},10000,"40 Years","The Duchenne Registry is an online, patient-report registry for individuals with Duchenne and Becker muscular dystrophy and carrier females. The purpose of the Registry is to connect Duchenne and Becker patients with actively recruiting clinical trials and research studies, and to educate patients and families about Duchenne and Becker care and research. At the same time, The Duchenne Registry is a valuable resource for clinicians and researchers in academia and industry, allowing access to de-identified datasets provided by patients and their families-information that is vital to advances in the care and treatment of Duchenne. The Duchenne Registry is a member of the TREAT-NMD Neuromuscular Network.",[56,25,26,27,57],"Duchenne Muscular Dystrophy","Dystrophinopathy Female Carrier",[29,30,31],"2026-05-05",{"date":61,"type":36},"2026-05-08",{"date":63,"type":36},"2007-10",{"date":65,"type":19},"2047-10",{"name":42,"class":43},1,""]