Belgian Neuromuscular Diseases Registry - Spinal Muscular Atrophy

06/05/2024
17/10/2024
Data source
Human
Other
Download as PDF
Population Qualitative Data

Population age groups

  • Paediatric Population (< 18 years)
    • Neonate
      • Preterm newborn infants (0 – 27 days)
      • Term newborn infants (0 – 27 days)
    • Infants and toddlers (28 days – 23 months)
    • Children (2 to < 12 years)
    • Adolescents (12 to < 18 years)
  • Adult and elderly population (≥18 years)
    • Adults (18 to < 65 years)
      • Adults (18 to < 46 years)
      • Adults (46 to < 65 years)
    • Elderly (≥ 65 years)
      • Adults (65 to < 75 years)
      • Adults (75 to < 85 years)
      • Adults (85 years and over)

Description of the population covered by the data source in the catchment area whose data are not collected (e.g., people who are registered only for private care)

SMA patients living in Belgium, followed at a neuromuscular reference center.
The BNMDR-SMA project specifically collects data on spinal muscular atrophy patients, on an annual basis. Clinicians from the 7 Belgian neuromuscular reference centers collect robust longitudinal data that (a) captures the natural history of the disease, (b) measures the effectiveness of emerging interventions and (c) informs standards of care for patients.