Understanding the Spectrum of SCA1, SCA2, SCA3, SCA6 Through the Eyes of Patients and Caregivers

The Spinocerebellar ataxias (SCA) are a large group of autosomal dominant disorders characterized by cerebellar and brainstem atrophy degeneration frequently in combination with brain stem atrophy. The major clinical signs include unsteady gait, loss of coordination of limbs, dysarthria and visual problems. Additional signs and symptoms include cognitive impairment, limb and trunk ataxia, tremor, rigidity, bradykinesia, dystonia, and hyperreflexia.

The objectives of this study are 1) to augment the understanding of the medical literature data with incorporation of patient voice in SCA, and 2) to capture burden of disease information to better understand what it is like for both the patient and family to live with the disorder and identify what constructs or aspects of disease are most meaningful to them. Click here to go take the short survey.