Registry for Spinocerebellar Ataxias in Hong Kong
Hong Kong Spinocerebellar Ataxias Registry
Chinese University of Hong Kong · NCT03336008
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 |
|---|---|
| Enrollment | 300 (estimated) |
| Ages | 18 Years to 90 Years |
| Sex | All |
| Sponsor | Chinese University of Hong Kong (other) |
| Locations | 1 site (Hong Kong, Shatin) |
| Trial ID | NCT03336008 on ClinicalTrials.gov |
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.
Who should consider this trial
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.
Not a fit: Patients with known recessive, X-linked, or mitochondrial ataxias may not benefit from this study.
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 performed: While there have been registries for other rare diseases, this specific approach for SCAs in the Chinese population is novel and untested.
Eligibility criteria
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 this trial is running
Hong Kong, Shatin
- 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
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.
Conditions: Spinocerebellar Ataxia