CuidAME: Longitudinal Data Collection From Patients With Spinal Muscular Atrophy in Spain
Status: Recruiting
Location: See location...
Study Type: Observational
SUMMARY
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.
Eligibility
Participation Requirements
Sex: All
Healthy Volunteers: f
View:
• Genetically confirmed 5q SMA
• Patient or caregivers written informed consent has been obtained (except for paediatric patients deceased).
Locations
Other Locations
Spain
Hospital Sant Joan de Déu
RECRUITING
Esplugues De Llobregat
Contact Information
Primary
CUIDAME Project Manager
info@registro-cuidame.org
0034 936 009 751
Time Frame
Start Date: 2020-05-05
Estimated Completion Date: 2026-12
Participants
Target number of participants: 1000
Treatments
Subjects with Spinal Muscular Atrophy 5q
Subjects with Spinal Muscular Atrophy 5q
Related Therapeutic Areas
Sponsors
Leads: Fundació Sant Joan de Déu