Clinical and Neuropsychological Investigations in Batten Disease

Launched by UNIVERSITY OF ROCHESTER · Jun 5, 2013

Keywords

ClinConnect Summary

This clinical trial is looking at Batten disease, a rare genetic condition that affects the nervous system. The main goal is to gather information about how this disease affects people's everyday abilities, including their movement, behavior, and overall functioning. Researchers will also work on improving a specific tool called the Unified Batten Disease Rating Scale (UBDRS), which helps doctors assess how the disease impacts patients.

To participate, individuals of any age who have any form of Batten disease, as well as parents or guardians of those affected, are eligible. Participants can expect to share important information about their experiences with the disease, which will help improve understanding and treatment in the future. It's important to note that parents or guardians must be willing to give permission for their participation. This study is currently recruiting participants, and everyone is welcome to take part, regardless of age or gender.

Gender

ALL

Eligibility criteria

• Inclusion Criteria:
• • child or adult with any form of Batten disease
• • parent or legal guardian of a child or adult with any form of Batten disease
• Exclusion Criteria:
• • - parent or guardian unable or unwilling to provide permission for the affected individual