The Spanish National Registry for Myotonic Dystrophy Type 1

Myotonic Dystrophy Type 1 (DM1) is a rare genetic neuromuscular condition that can affect multiple organs and varies widely in how it presents. DM1 is the most common form of adult-onset muscular dystrophy, with an estimated prevalence of approximately 1-5 per 10,000 people. In Spain, the condition shows notable regional differences, making it especially important to understand its characteristics within the population. The aim of this study is to support a research initiative designed to better characterise DM1. We are developing a comprehensive national registry, collecting patient-reported information, clinical data and omics data that will improve our understanding of the disease and help identify individuals who may be eligible for clinical trials.

NCT Number	NCT07385443
Lead Sponsor	Fundació Institut Germans Trias i Pujol Collaborators: Instituto de Investigacion Sanitaria INCLIVA, Biobizkaia Health Research Institute, Biogipuzkoa Health Research Institute, Germans Trias i Pujol Hospital, Hospital Infanta Sofia, Hospital de Basurto, Hospital Donostia, Hospitales Universitarios Virgen del Rocío, Hospital Universitario Marqués de Valdecilla, Complejo Hospitalario Universitario de Albacete, Hospital Universitario La Fe, Hospital Univeritario Ntra. Sra. de la Candelaria
Conditions	Myotonic Dystrophy 1, DM1, Myotonic Dystrophy Type 1, Myotonic Dystrophy, Congenital, Steinert Disease
Enrollment	3,000 participants
Start Date	2025-06-02
Primary Completion	2026-12-31 (estimated)
Study Completion	2026-12-31 (estimated)
Updated on ClinicalTrials.gov	2026-02-04