CuidAME: Longitudinal Data Collection From Patients With Spinal Muscular Atrophy in Spain
Recruiting
Observational Study
Spinal Muscular Atrophy
No Placebo Group
Every participant receives an active treatment — no one gets a placebo.
No Study Drug
Researchers observe your health over time — no experimental treatment is given.
At a Glance
- Sex
- Any
- Study type
- Observational
- Participants needed
- 1,000 (estimated)
- Sponsor
- Fundació Sant Joan de Déu · Other
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About This Trial
The goal of this observational study is to set up a longitudinal data collection study to perform a long-term follow-up of SMA patients in a real-world setting, and to standardise and homogenize the data collection process for SMA patient's data. Treated and untreated patients will be followed based on the routine clinical practice schedule.
Trial Locations
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Eligibility Criteria
Inclusion Criteria:
* Genetically confirmed 5q SMA
* Patient or caregivers written informed consent has been obtained (except for paediatric patients deceased).
Exclusion Criteria:
* Further types of SMA (non-5q SMA).
* Patient without legal capacity who cannot understand the nature, significance…
Contacts