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Data collection for adults with Spinal Muscular Atrophy

Adult SMA REACH: Development and Implementation of a Standardised Data Set and Data Collection Research Study in the UK Adult SMA Population

Observational Newcastle-upon-Tyne Hospitals NHS Trust · NCT06978985

This study is collecting information from adults with Spinal Muscular Atrophy to see how current treatments are working and to improve care for patients.

Quick facts

Study typeObservational
Enrollment600 (estimated)
Ages16 Years and up
SexAll
SponsorNewcastle-upon-Tyne Hospitals NHS Trust Academic / other
Locations18 sites (Birmingham and 17 other locations)
Trial IDNCT06978985 on ClinicalTrials.gov

What this trial studies

The Adult SMA REACH initiative is an observational study focused on gathering data to better understand the effects of existing treatments and standards of care on adults with Spinal Muscular Atrophy (SMA). This study builds on previous efforts in pediatric SMA research and aims to enhance patient care through collaboration with various organizations, including TREAT-NMD and the UK SMA Patient Registry. By collecting comprehensive data on the natural history of SMA and treatment outcomes, the study seeks to inform clinical decision-making and support future research initiatives. It involves patients aged 16 and older who have a genetically confirmed diagnosis of 5q SMA.

Who should consider this trial

Good fit: Ideal candidates for this study are adults aged 16 and older with a genetically confirmed diagnosis of 5q Spinal Muscular Atrophy.

Not a fit: Patients with non-5q SMA or those under 16 years of age will not benefit from this study.

Why it matters

Potential benefit: If successful, this study could lead to improved understanding and management of Spinal Muscular Atrophy in adults, ultimately enhancing patient outcomes.

How similar studies have performed: Previous studies focusing on SMA data collection in pediatric populations have shown success, indicating a promising approach for adult SMA research.

Eligibility criteria

Show full inclusion / exclusion criteria 
Inclusion Criteria:

* Age ≥16 years (when patients will begin the transition process to adulthood)
* Genetically confirmed diagnosis of 5q SMA
* Signed informed consent to take part in the study

Exclusion Criteria:

* Non-5q SMA
* No genetic confirmation
* \<16 years of age
* No signed informed consent or consent withdrawn

Where this trial is running

Birmingham and 17 other locations

Study contacts

How to participate

  1. Review the eligibility criteria above with your treating physician.
  2. Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
  3. Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.
View on ClinicalTrials.gov → Find more trials like this →
Conditions Spinal Muscular AtrophySMAData collectionAdult SMASMA REACHData collection studySpinalMuscular Atrophy, Spinal
Last reviewed 2026-06-09 by the Find a Trial editorial team. Information on this page is for educational purposes and is not medical advice. Always consult qualified healthcare professionals about clinical trial participation.