Major Duchenne Registry Launches EHR Integration Study to Accelerate Research — What Clinicians Need to Know
247 Health News Editorial
·12 June 2026
·4 min read
·clinical-trialsA landmark 2,500-patient registry study integrating electronic health records with patient-reported outcomes aims to accelerate Duchenne muscular dystrophy research and improve care standards. The study combines 10 years of retrospective data with prospective collection through 2035.
Originally reported by ClinicalTrials.gov
References
- 1.The Duchenne Registry. (2024). Duchenne Outcomes Research Interchange Data Enrichment Through EHR Extraction. ClinicalTrials.gov. https://clinicaltrials.gov/study/NCT07609394
- 2.Mendell, J. R., Shilling, C., Leslie, N. D., Flanigan, K. M., al-Dahhak, R., Gastier-Foster, J., Kneile, K., Dunn, D. M., Duval, B., Aoyagi, A., Hamil, C., Mahmoud, M., Roush, K., Bird, L., Rankin, C., Lim, C., Walker, C. M., Sproule, D. M., Kuntz, N., ... Swoboda, K. J. (2012). Evidence-based path to newborn screening for Duchenne muscular dystrophy. Annals of Neurology, 71(3), 304-313. https://doi.org/10.1002/ana.22799
- 3.Birnkrant, D. J., Bushby, K., Bann, C. M., Apkon, S. D., Blackwell, A., Brumbaugh, D., Case, L. E., Clemens, P. R., Hadjiyannakis, S., Pandya, S., Street, N., Tomezsko, J., Wagner, K. R., Ward, L. M., Weber, D. R., & DMD Care Considerations Working Group. (2018). Diagnosis and management of Duchenne muscular dystrophy, part 1: diagnosis, and neuromuscular, rehabilitation, endocrine, and gastrointestinal and nutritional management. Lancet Neurology, 17(3), 251-267. https://doi.org/10.1016/S1474-4422(18)30024-3
- 4.Conway, K. M., Gehrig, S. M., Rybalka, E., & Lynch, G. S. (2022). Emerging therapeutic approaches for Duchenne muscular dystrophy. Current Opinion in Neurology, 35(5), 634-645. https://doi.org/10.1097/WCO.0000000000001045
- 5.Ryder, S., Leadley, R. M., Armstrong, N., Westwood, M., de Kock, S., Butt, T., Jain, M., & Kleijnen, J. (2017). The burden, epidemiology, costs and treatment for Duchenne muscular dystrophy: an evidence review. Orphanet Journal of Rare Diseases, 12(1), 79. https://doi.org/10.1186/s13023-017-0631-3
- 6.Bladen, C. L., Salgado, D., Monges, S., Foncuberta, M. E., Kekou, K., Kosma, K., Dawkins, H., Lamont, L., Roy, A. J., Chamova, T., Guergueltcheva, V., Chan, S., Korngut, L., Campbell, C., Dai, Y., Wang, C., Barisic, N., Brabec, P., Lahdetie, J., ... Lochmüller, H. (2015). The TREAT-NMD DMD Global Database: analysis of more than 7,000 Duchenne muscular dystrophy mutations. Human Mutation, 36(4), 395-402. https://doi.org/10.1002/humu.22758
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247 Health News Editorial
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