Recruiting

A Registered Cohort Study on Spinal Muscular Atrophy

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What is being collected

Data Collection

Collected from today forward - Prospective
Who is being recruted

Central Nervous System Diseases+4

+ Muscular Atrophy, Spinal

+ Nervous System Diseases

See all eligibility criteria
How is the trial designed

Cohort

Tracking disease incidence in order to identify risk factors and understand disease progression over time.
Observational
Study Start: July 2019
See protocol details

Summary

Principal SponsorWan-Jin Chen
Study ContactYi Lin, PhDMore contacts
Last updated: January 27, 2026
Sourced from a government-validated database.Claim as a partner

Study start date: July 1, 2019

Actual date on which the first participant was enrolled.

Spinal muscular atrophy (SMA) is an autosomal recessive disease that causes progressive muscle wasting and weakness due to loss of motor neurons in the spinal cord. This is a registered cohort of spinal muscular atrophy (SMA) type I，II and III in China. This study will provide further insights into the clinical course of SMA including overall survival, demographic characteristics, motor function, respiratory support, feeding and nutritional support, growth and development. The correlation of genotype and phenotype will be conducted.

Official TitleA Registered Cohort Study on Spinal Muscular Atrophy
NCT04010604
Principal SponsorWan-Jin Chen
Study ContactYi Lin, PhDMore contacts
Last updated: January 27, 2026
Sourced from a government-validated database.Claim as a partner

Protocol

This section provides details of the study plan, including how the study is designed and what the study is measuring.
Design Details

2000 patients to be enrolled

Total number of participants that the clinical trial aims to recruit.

Cohort

These studies follow a group of individuals with common characteristics (such as a condition or birth year) over a specific period to study health outcomes or exposures.

Eligibility

Researchers look for people who fit a certain description, called eligibility criteria: person's general health condition or prior treatments.
Conditions
Criteria

Any sex

Biological sex of participants that are eligible to enroll.

Range of ages for which participants are eligible to join.

Healthy volunteers allowed

If individuals who are healthy and do not have the condition being studied can participate.

Conditions

Pathology

Central Nervous System DiseasesMuscular Atrophy, SpinalNervous System DiseasesNeuromuscular DiseasesSpinal Cord DiseasesMotor Neuron DiseaseNeurodegenerative Diseases

Criteria

Inclusion Criteria: * Patients with SMA types I, II and III * Asymptomatic SMA carriers * Relatives of SMA patients or carriers * Unrelated healthy controls * Participants or Parent(s)/legal guardian(s) willing and able to complete the informed consent process Exclusion Criteria: \* Participants are unable to comply with trial procedures and visit schedule

Study Plan

Find out more about all the medication administered in this study, their detailed description and what they involve.
Study Objectives

Study Objectives

Primary Objectives

Study Centers

These are the hospitals, clinics, or research facilities where the trial is being conducted. You can find the location closest to you and its status.

This study has 1 location

Recruiting

Department of Neurology, First Affiliated Hospital Fujian Medical University

Fuzhou, ChinaOpen Department of Neurology, First Affiliated Hospital Fujian Medical University in Google Maps
Recruiting
One Study Center
A Registered Cohort Study on Spinal Muscular Atrophy | PatLynk