CuidAME: Longitudinal Data Collection From Patients With Spinal Muscular Atrophy in Spain
NCT ID: NCT07231549
Last Updated: 2025-11-17
Study Results
The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.
Basic Information
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RECRUITING
1000 participants
OBSERVATIONAL
2020-05-05
2026-12-31
Brief Summary
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Treated and untreated patients will be followed based on the routine clinical practice schedule.
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Detailed Description
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Patients will be followed based on the routine clinical practice schedule. Motor outcomes will be captured regularly, following the SMA standards of for care, for patients with a DMT every 6 months or at least once per year in patients without DMTs, for at least a 5-year follow-up period initially, which could be extended under agreement with funders of the study.
Participation in this study does not modify or influence any clinical decisions regarding the treatment the patient may receive, clinical assessments performed or frequency of visits.
The study will not collect data from patients participating in a clinical trial from the time they are enrolled. Data collected before the enrolment may be used, and data collection may continue after the end of the clinical trial. Data generated during a clinical trial could be used if written permission from the clinical trial sponsor is obtained.
Conditions
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Study Design
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COHORT
PROSPECTIVE
Study Groups
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Subjects with Spinal Muscular Atrophy 5q
Subjects with Spinal Muscular Atrophy 5q
No interventions assigned to this group
Eligibility Criteria
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Inclusion Criteria
* Patient or caregivers written informed consent has been obtained (except for paediatric patients deceased).
Exclusion Criteria
* Patient without legal capacity who cannot understand the nature, significance, and consequences of the project.
ALL
No
Sponsors
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Fundació Sant Joan de Déu
OTHER
Responsible Party
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Principal Investigators
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Andrés Nascimento
Role: STUDY_CHAIR
Hospital Sant Joan de Deu
Mónica Povedano Panadés
Role: STUDY_CHAIR
Hospital Universitari de Bellvitge
Francina Munell Casadesús
Role: STUDY_CHAIR
Hospital Universitari Vall d'Hebrón
Miguel Angel Fernández García Miguel Angel Fernández García
Role: STUDY_CHAIR
Hospital Universitario La Paz
Inmaculada Pitarch Castellano
Role: STUDY_CHAIR
Hospital Universitario La Fe
Juan Francisco Vázquez Costa
Role: STUDY_CHAIR
Hospital Universitario La Fe
Maria Grazia Cattinari
Role: STUDY_CHAIR
Fundación Atrofia Muscular Espinal
Rocío Calvo
Role: STUDY_CHAIR
Hospital Universitario Regional de Málaga
Eduardo Martínez Salcedo
Role: STUDY_CHAIR
Hospital Universitario Virgen de la Arrixaca
Antonio Moreno Escribano
Role: STUDY_CHAIR
Hospital Universitario Virgen de la Arrixaca
Julita Medina Cantillo
Role: STUDY_CHAIR
Hospital Sant Joan de Deu
Locations
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Hospital Sant Joan de Déu
Esplugues de Llobregat, , Spain
Countries
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Central Contacts
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Related Links
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Related Info
Other Identifiers
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EOM-24-02
Identifier Type: -
Identifier Source: org_study_id
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