UK SMA Patient Registry
Launched by NEWCASTLE UNIVERSITY · Feb 28, 2020
Trial Information
Current as of June 26, 2025
Recruiting
Keywords
ClinConnect Summary
The UK SMA Patient Registry is a research study aimed at better understanding spinal muscular atrophy (SMA), a genetic condition that affects movement and muscle strength. SMA can vary in severity and is caused by a change in a specific gene passed down from both parents. This study is open to all patients diagnosed with SMA, including those waiting for a diagnosis confirmed by genetic testing. There are no exclusions based on age or gender, so anyone with SMA can participate.
If you decide to join, you can easily sign up online through a secure website. After reading some information about the study and giving your consent, you’ll be added to the registry. Participants are encouraged to update their information every six months, helping researchers gather important data about SMA in the UK and Ireland. This ongoing research will help improve understanding and treatment of SMA for future patients.
Gender
ALL
Eligibility criteria
- Inclusion Criteria:
- • All patients with a confirmed SMA diagnosis (or pending diagnosis) are eligible for inclusion. Diagnosis will be confirmed via genetic testing results
- Exclusion Criteria:
- • There are no exclusion criteria for the registry
About Newcastle University
Newcastle University is a leading research institution located in the United Kingdom, renowned for its commitment to advancing healthcare through innovative clinical trials and scientific research. The university's Clinical Trials Unit plays a pivotal role in the design, coordination, and execution of high-quality clinical studies, focusing on a wide range of therapeutic areas. With a multidisciplinary team of experts, Newcastle University fosters collaboration between academia, industry, and healthcare providers, ensuring that research findings translate into meaningful advancements in patient care. Its dedication to excellence and ethical standards positions Newcastle University as a trusted sponsor in the clinical research landscape.
Contacts
Jennifer Cobb
Immunology at National Institute of Allergy and Infectious Diseases (NIAID)
Locations
Newcastle Upon Tyne, , United Kingdom
Patients applied
Trial Officials
Chiara Marini-Bettolo, MD, PhD
Principal Investigator
Newcastle University
Timeline
First submit
Trial launched
Trial updated
Estimated completion
Not reported
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