Help Develop New Treatments
Research alone can’t find the cure for Ataxia. Researchers need participation form people with Ataxia to get there. Here are things that you can do to help researchers develop new treatments and look for a cure.
Patient Registries are essential tools to help researchers move into translational or clinical phases of research. If you or a family member are affected by ataxia or are at risk for ataxia, sign up on the appropriate patient registry listed below. (you can be included on more than one patient registry.)
Ataxia Patient Registry at CoRDS The CoRDS Registry was established to facilitate the establishment of rare disease registries for all rare diseases with a specific questionnaire for those with any type of ataxia or those at risk for ataxia.
Friedreich’s Ataxia Research Alliance Patient Registry for those with Friedreich’s ataxia.
The Fragile X Research Registry is for families who have individuals with Fragile X-associated tremor/ataxia syndrome (FXTAS) in the United States.
Autosomal recessive spastic ataxia of Charlevoix-Saguenay ARSACS The purpose of this website is to create a new database for the SACSIN gene mostly reported in the province of Quebec, Canada.
Ataxia-Telangiectasia (A-T) Children’s Project Family Data Base is to help A-T families stay in touch with the A-T Children’s Project for information about clinical studies.
The following links are great resources for finding research studies that are looking for volunteer participants.
- CenterWatch: A national and international listing of clinical trials
- ClinicalTrials.gov: Provides updated information about federally and privately supported clinical research
- Clinical Research Consortium for the SCA’s
- NIH: Research and scientific resources
- Rare Diseases Clinical Research Network: Provides information on clinical trials in Episodic Ataxia.
The following links will provide information about participating in a clinical trial.
- NIH Clinical Research Trials and You
- The Center for Information and Study on Clinical Research Participation (CISCRP)
- Association of Clinical Research Professionals
Association of Clinical Research Professionals
This article, in the January
The National Ataxia Foundation is committed to providing information to those affected by ataxia including the availability of research studies and clinical trials for the study of ataxia.
Below you will find clinical trials and research opportunities for those with various types of ataxia. These trials have been approved and monitored by an Institutional Review Board (IRB) to make sure the risks are as low as possible and are worth any potential benefits.
- An updated IRB approved clinical study at Weill Cornell Medical College on Friedreich’s Ataxia is recruiting individuals located anywhere in the United States, not just locally in the NYC area, between the ages of 18-30.
- A Phase II, Open Label Prospective Single Center Drug Study Evaluating the Safety and Efficacy of (+)-Epicatechin in Subjects With Friedreich’s Ataxia
- An Open-label Trial of Intravenous Immune Globulin in Treating SCAs
- Do you have Cerebellar Ataxia? Would you like to participate in a sleep study?
- Genes in Inherited Disorders Study
- Individuals with SCA1, SCA2, SCA3, SCA6, SCA8 needed for research study at Johns Hopkins
- Individuals with SCA6 and SCA8 are Needed to Participate in Research Studying Ataxic Movements at the Kennedy Krieger Institute
- Ataxia research project at the University of California, Berkeley
- Natural History of Spinocerebellar Ataxia Type 7
- Recruiting participants who are at least 14 years or older who have a genetically confirmed diagnosis of SCA7
- SCA 4 & 7
- Seeking individuals for a study to better understand the brain in individuals with FXTAS
- Trial in Adult Subjects with Spinocerebellar Ataxia types 1,2,3,6,7,8 and 10
- Two-part study to evaluate the efficacy, safety, and pharmacodynamics of RTA 408 in the treatment of patients with Friedreich’s ataxia
Donating tissue for medical research is an importantand deeply personal decision. Proper planning can helpensure that wishes are accounted for and honored at thetime of your or a loved one’s passing. For additional information on tissue donation, contact the National Ataxia Foundation at firstname.lastname@example.org or call 763-553-0020. Thank you for considering this important legacy gift.