CuidAME: Spain's longitudinal registry for spinal muscular atrophy

Is this trial a fit for you?

A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.

What this trial studies

CuidAME is a retrospective and prospective multicenter registry in Spain that collects pseudo-anonymized clinical, genetic, treatment, and outcome data using the TREAT‑NMD SMA Core Dataset plus steering committee additions. Patients with genetically confirmed 5q SMA, treated or untreated, are followed according to routine clinical practice, with motor outcomes captured every six months for those on disease-modifying therapies and at least annually for those not on DMTs. Data are collected for an initial minimum of five years and may be extended with funder agreement, and participation does not change clinical care or visit schedules. Data from concurrent clinical trials are not collected during trial enrollment unless sponsor permission is obtained.

Why it matters

Who can join: the full rules

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, and consequences of the project.

Where it's running

• Hospital Sant Joan de Déu
  Esplugues de Llobregat, Spain Recruiting

Study contacts

• Study coordinator: CUIDAME Project Manager
• Email: info@registro-cuidame.org
• Phone: 0034 936 009 751

Similar studies

Other studies for the same condition or treatment. Recruiting studies are listed first.

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• Salanersen (BIIB115) for improving movement in people 15–60 with spinal muscular atrophy who are treatment‑naïve or previously on risdiplam

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  Recruiting at 3 sites Phase 3 Biogen · Palo Alto, California and 2 other locations · NCT07444476

• Apitegromab for infants under 2 with spinal muscular atrophy

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  Recruiting at 23 sites Phase 2 Scholar Rock, Inc. · Phoenix, Arizona and 22 other locations · NCT07047144

• Understanding fatigue in patients with spinal muscular atrophy treated with nusinersen

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How to take part

1. Review the eligibility criteria above with your treating physician.
2. Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
3. Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.