DM1-Hub collects comprehensive, harmonized data to capture the full clinical spectrum of DM1, integrating clinical, functional, patient-reported and biological outcomes.

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1. Clinical characterization covers anthropometric data, lifestyle factors, cardiovascular risk factors, and multisystem involvement (cardiac, respiratory, gastrointestinal, genitourinary), as well as current medication.

2. Functional assessment includes standardized physical examination and functional tests such as muscle strength (MRC scale), MIRS, 6-Minute Walk Test (6MWT), 10-Meter Walk/Run Test (10MWRT), 30-second chair-stand test (30SST),  and handgrip strength measured by dynamometry.

3. Complementary assessments including ECG, spirometry, and routinely collected laboratory data from the previous year (when available), among others.

4. Demographic and diagnostic data include geographic origin, educational level, occupation, age at diagnosis, age at symptom onset, and family history.

5. Genomic and proteomic characterization, enabling translational research and fostering collaboration across clinical and basic science domains.

6. Patient-reported outcome measures (PROMs) assess sleepiness, fatigue, apathy, physical activity, adherence to the Mediterranean diet, and functional status using DM1-Activ.

7. Neuropsychological assessment evaluates global cognition (IQ), memory, attention and processing speed, visuoconstruction, language, and executive functions, using a structured battery administered by trained staff.