Research Studies
Research Studies
As research studies, natural history studies, and clinical trials become available that are specific to SCA27B or include it, they will be posted here. Click the green hyperlinks to get more information about each study.
The University of Chicago (PI - Dr. Gomez) is conducting a survey-based study to learn about the genetic and environmental factors that impact onset, severity, and progression of SCA6 and SCA27B. This study involves the creation of a database of genetic, clinical, and environmental information from people who have a diagnosis of SCA6 or SCA27B. Click here for the survey.
Click here to find out more about a remote study through the Center for Accessible Neuropsychology (CAN) at Tel Aviv University. The study aims to understand how Cerebellar Ataxia and Parkinson's Disease impact psychological, emotional, and cognitive processes.
Click here to find out more about a remote research study on Understanding the Patient Experience with Genetic Testing for Ataxias.
Click here to learn more about this remote study open to all SCAs - Social network analysis in ataxia patients: exploring correlations with quality of life and functional outcomes
If you are in the U.S. and have genetic confirmation of SCA27B, you may qualify for this MRI study at Johns Hopkins
Click here to find out more about a remote research study on the role of the cerebellum in movement and thought
This study explores rare disease patients’ experiences of gaining access to relevant treatment/medicine in the EU, UK, and USA - including any barriers encountered in coverage/reimbursement, and its wider social implications. Interviews are conducted for this study. To learn more click here. If interested in participating, please email sca27b@gmail.com and we will connect you to the study’s coordinator.
NAF is coordinating a SCA27B Natural History Study in the US & Canada beginning in 2024. Click here to see if you are eligible. If you are eligible & interested in participating, contact the research coordinator near you. Click here to view a webinar hosted by NAF about what a Natural History Study in ataxia is all about.
NAF hosts a brain donation program. If you live in the U.S. and would like more information about donating your brain (after death :) to ataxia research, click here.