Natural History of Genetic Modifiers in Spinocerebellar Ataxias
Recruiting
99 years and younger
All
Phase
N/A
15 participants needed
1 Location
Brief description of study
- PURPOSE
- The purpose of this research study is to bring together a group of experts in the field of SCA for the purpose of learning more about the disease, finding out how the disease progresses over time, and what may be the best way to measure progression. Also, the study will investigate if some genes, other than the gene that is abnormal in a given form of the disease, have any effect on the way the disease behaves. Objective 1: To collect and document clinical data from individuals with specific genetic ataxias to facilitate clinical trials and/or further research. Objective 2: To collect and store biospecimens from individuals with specific genetic ataxias to facilitate clinical trials and/or further research. 1. To collect data on how individuals with different SCAs perform on validated clinical assessments annually (e.g. SARA). 2. To collect data on how individuals with different SCAs perform on clinical assessments that have yet to be validated amongst individuals with ataxia annually (e.g. PROM-Ataxia) 3. To have a database of the clinical data and assessments that is readily available for approved researchers to access the data for analysis. 4. To store the blood and cerebrospinal fluid such that researchers have access to the biospecimens after review and approval.
Eligibility of study
You may be eligible for this study if you meet the following criteria:
- Conditions: Medical Research
-
Age: - 99 Years
-
Gender: All
TBD
Updated on
09 Oct 2024.
Study ID: 853266
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