Registry for Spinocerebellar Ataxias in Hong Kong
Official title: Hong Kong Spinocerebellar Ataxias Registry
Run by Chinese University of Hong Kong · NCT03336008 · Data updated 2026-11-12
This study is creating a registry for spinocerebellar ataxias in Hong Kong to help understand the condition better by collecting information from people diagnosed with it and their family members.
Quick facts
| Study type | Observational |
|---|---|
| Ages | 18 Years to 90 Years |
| Sex | All |
| Enrollment | 300 (estimated) |
| Sponsor | Chinese University of Hong Kong Academic / other |
| Locations | 1 site (Hong Kong, Shatin) |
| Status | Recruiting |
| Started | December 7, 2012 |
| Main results expected | December 31, 2034 |
| Study ends | December 31, 2034 |
| Registry record updated | August 27, 2024 |
| Trial ID | NCT03336008 on ClinicalTrials.gov |
Is this trial a fit for you?
✓Likely a good fit
Ideal candidates include individuals aged 18 and older with a confirmed diagnosis of SCA1, 2, 3, 6, 7, 8, or 12, or their symptomatic relatives.
✕Probably not a fit
Patients with known recessive, X-linked, or mitochondrial ataxias may not benefit from this study.
A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.
What this trial studies
This observational study aims to establish the first registry for spinocerebellar ataxias (SCA) in Hong Kong, focusing on the most common types affecting the Chinese population. Participants will include individuals with a confirmed genetic diagnosis of SCA and their ataxic relatives, who will undergo detailed clinical assessments and neurological examinations. The study will collect clinical data, genotypes, and biological samples to better understand the disease mechanisms and manifestations. Follow-up assessments will occur annually over two years to monitor disease progression.
Why it matters
Potential benefit: If successful, this registry could enhance understanding of spinocerebellar ataxias and pave the way for the development of effective treatments.
How similar studies have gone: While there have been registries for other rare diseases, this specific approach for SCAs in the Chinese population is novel and untested.
Who can join: the full rules
Show full inclusion / exclusion criteria
Inclusion Criteria: 1. Age 18 years and above 2. Presence of symptoms and signs of ataxia 3. Definite molecular diagnosis of SCA1, 2, 3, 6, 7, 8 or 12 either in the participant or another affected family member 4. Willingness to participate in the study and ability to give informed consent Exclusion Criteria: 1\. Known recessive. X-linked, and mitochondrial ataxias
Where it's running
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Prince of Wales Hospital
Hong Kong, Shatin, Hong Kong Recruiting
Study contacts
- Principal investigator: Anne YY CHAN — Chinese University of Hong Kong
- Study coordinator: Anne YY CHAN
- Email: yychananne@gmail.com
- Phone: (852) 3505 1855
Similar studies
Other studies for the same condition or treatment. Recruiting studies are listed first.
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Eye problems in dominant spinocerebellar ataxias
This project tests whether adults with SCA1, SCA2, SCA3, or SCA27B have retinal or optic nerve changes by doing neurological and eye exams.
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Effects of Antrodia Cinnamomea on Spinocerebellar Ataxia Symptoms
This study is testing whether a product made from Antrodia cinnamomea can help improve symptoms in people with spinocerebellar ataxia.
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Observing the natural progression of spinocerebellar ataxia
This study looks at how different types of spinocerebellar ataxia progress over time to help understand the disease better and improve care for those affected.
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Interposed Nucleus aDBS for Ataxia in SCA6
A small, single-center study will try a cerebellar adaptive deep brain stimulation approach to help adults with Spinocerebellar Ataxia type 6.
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Adaptive deep brain stimulation in the cerebellum for spinocerebellar ataxia type 6
This will see if an implanted adaptive deep brain stimulator placed in the cerebellum can reduce movement and balance problems in adults with SCA6 who still have symptoms.
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Registry for patients with rare diseases
This study is creating a central registry for people with rare diseases to help connect them with researchers and improve treatments.
How to take part
- Review the eligibility criteria above with your treating physician.
- Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
- Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.