Participation in the Natural History Study Improves Clinical Care for Ataxia

December 2, 2021

We want to tell you about an opportunity to participate in research that can improve clinical care for Ataxia!

Did You Know?

NAF actively recruits research participants for the natural history study on Ataxia, which is run by the Clinical Research Consortium for the Study of Cerebellar Ataxias (CRC-SCA). Their mission is to better understand factors that determine Ataxia progression to improve understanding of the disease process and help with developing treatments.

Why Should You Participate?

Some Ataxia research studies use data from the natural history study. These studies can help guide clinicians to improve their clinical care for Ataxia patients. Advancements in research to discover treatments and, ultimately, a cure for Ataxia, will only take place with active patient engagement in studies and trials.

Are You Eligible for the Natural History Study?

Individuals in the United States with a confirmed diagnosis of SCA 1, 2, 3, 6, 7, 8, or 10 are eligible to participate. The natural history study accepts people at any stage of the disease – including those who are diagnosed but are not yet experiencing symptoms. To find a site enrolling participants visit www.ataxia.org/crc-sca. To learn more about other opportunities to participate in research, visit www.ataxia.org/help-develop-new-treatments/.

Recent Research Using the Natural History Study

A recently published paper about difficulty swallowing, or dysphagia, in Ataxia patients could only happen because of participation in the study by those with Ataxia. Those individuals provided the basis for the study which addressed three questions:

What is the prevalence of dysphagia in this patient group?
What is the association between dysphagia and other clinical characteristics?
What stage of the disease does dysphagia become a prominent symptom?

Authors of the paper noted that those questions were answered because of data gathered from the natural history study.

Research Results

In the natural history study, close to 60% of participants experience swallowing difficulties. Swallowing difficulties were most common for those with SCA1. Ataxia symptom severity was greater in patients who experienced dysphagia.

Why is this important? This type of study can guide clinicians to improve their clinical care for Ataxia patients who have dysphagia. A deeper understanding of swallowing difficulties is important because aspiration pneumonia is one of the leading causes of death for those with Ataxia. In addition, this study may help in drug development to possibly use dysphagia as an outcome measure for future clinical trials.

Thank you to the Ataxia community for your participation in research studies and clinical trials! It is essential to accelerate the development of treatments and search for a cure!