Rare Disease Registry for Movement Disorders in Southern Anhui

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

This observational registry aims to document clinical features, diagnoses, and outcomes in patients with selected motor neuron and hereditary movement disorders. It collects data from eligible adults at a single center in Wuhu, Anhui, to better understand these rare conditions. The study addresses challenges in rare disease research such as small patient numbers and symptom diversity by systematically compiling patient information for future analyses. It does not involve an experimental treatment but focuses on data collection to support improved care and research planning. Participation is based on informed consent and specific diagnostic criteria.

Why it matters

Who can join: the full rules

Inclusion Criteria:

* Adults aged 19 years or older who are capable of giving informed consent.
* Definitive diagnosis of one of the following diseases: (1) amyotrophic lateral sclerosis (diagnosed according to the revised El Escorial criteria, Awaji criteria, or Gold Coast criteria); (2) spinocerebellar ataxia; (3) muscular dystrophy; (4) hereditary spastic paraplegia.
* Others: primary lateral sclerosis, progressive muscular atrophy, ALS-FTD syndrome, progressive bulbar palsy, benign focal muscular atrophy, and other motor neuron diseases.

Exclusion Criteria:

* Patients with concomitant systemic diseases;
* Vulnerable research subjects: minors and patients with cognitive impairment;
* Participants from whom clinical information and human biological samples cannot be collected;
* Other patients judged by the investigators to be unsuitable for participation in the study.

Where it's running

• First affiliated hospital of Wannan Medical University
  Wuhu, Anhui, China Recruiting

Study contacts

• Study coordinator: Xianjin Shang, Prof.
• Email: shangxj2013@wnmc.edu.cn
• Phone: 86 151 5530 0503

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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.