National registry of patients with ALS

National ALS registry is a centralised electronic database collecting standardised clinical, demographic, laboratory/instrumental and behavioural information on patients with amyotrophic lateral sclerosis (ALS) in the Russian Federation.

Main goals of the registry:

• statistical accounting and epidemiological surveillance;
• monitoring of disease progression and response to therapy;
• support for clinical research and pharmacovigilance;
• planning of medical care and assessment of quality of care;
• provision of aggregated anonymised data for scientific research and development of AI models (including those based on ALS Monitor data).

Data structure of the registry

1. Identification and demographics

• Unique registration number (UUID)
• Age, sex, date of birth
• Region, locality, site of follow-up

2. Diagnosis and clinical information

• Date of initial ALS diagnosis
• ALS subtype (spinal, bulbar, etc.)
• Medical history and comorbidities

3. Scales and disease dynamics

• ALSFRS-R (dated values)
• Respiratory function (FVC, spirometry)
• Body weight, BMI, daily caloric intake

4. Nutrition

• Body weight and its dynamics
• Enteral nutrition, gastrostomy
• Calculation of daily caloric intake