The registry has been involved in supporting a variety of clinical trials and research studies since 2012. Please find below a range of publications involving the registry, and projects that the registry has supported. To view these, click on the link in the study title.








  • Landfeldt, E., Nikolenko, N., Jimenez‐Moreno, C., Cumming, S., Monckton, D.G., Faber, C.G., Merkies, I.S., Gorman, G., Turner, C. and Lochmüller, H., (2020). ‘Activities of daily living in myotonic dystrophy type 1’. Acta Neurologica Scandinavica141(5), pp.380-387.










  • Landfeldt, E., Nikolenko, N., Jimenez-Moreno, C., Cumming, S., Monckton, D.G., Gorman, G., Turner, C. and Lochmüller, H., (2019). Disease burden of myotonic dystrophy type 1’. Journal of neurology266(4), pp.998-1006.











  • Nikolenko, N., Wood, L., Turner, C., Hilton-Jones, D., Atalaia, A., Marini-Bettolo, C., Maddison, P., Philips, M., Roberts, M., Rogers, M., Straub, V., Hammans, S. and Lochmuller, H. (2016). 'The UK Myotonic Dystrophy Patient Registry'. Journal of Neuromuscular Diseases, 3, pp 166-167.