NCT01873924 Clinical and Neuropsychological Investigations in Batten Disease
| NCT ID | NCT01873924 |
| Status | Recruiting |
| Phase | — |
| Sponsor | University of Rochester |
| Condition | Neuronal Ceroid Lipofuscinosis |
| Study Type | OBSERVATIONAL |
| Enrollment | 500 participants |
| Start Date | 2004-08 |
| Primary Completion | 2035-08 |
Eligibility & Interventions
Eligibility Fast-Check
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What to Expect as a Participant
This is an observational study. You will not receive an experimental treatment; researchers will collect data based on your existing condition or standard treatment.
This trial targets 500 participants in total. It began in 2004-08 with a primary completion date of 2035-08.
⚠ This information is for research awareness only. Always consult your physician before joining any clinical trial. Participation is voluntary and you may withdraw at any time.
Brief Summary
This study aims to assess the natural history of Batten disease (Neuronal Ceroid Lipofuscinosis) by obtaining information about the motor, behavioral, and functional capabilities of individuals with Batten disease. This study will also refine and validate the Unified Batten Disease Rating Scale (UBDRS) as a clinical rating instrument for Batten disease.
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
Contact & Investigator
Jonathan W Mink, MD PhD
PRINCIPAL INVESTIGATOR
University of Rochester
Frequently Asked Questions
Who can join the NCT01873924 clinical trial?
This trial is open to participants of all sexes, studying Neuronal Ceroid Lipofuscinosis. Full inclusion and exclusion criteria are listed in the Eligibility Criteria section. Always confirm your eligibility with the research team before applying.
Is NCT01873924 currently recruiting?
Yes, NCT01873924 is actively recruiting participants. Contact the research team at amy_vierhile@urmc.rochester.edu for enrollment information.
Where is the NCT01873924 trial being conducted?
This trial is being conducted at Rochester, United States.
Who is sponsoring the NCT01873924 clinical trial?
NCT01873924 is sponsored by University of Rochester. The principal investigator is Jonathan W Mink, MD PhD at University of Rochester. The trial plans to enroll 500 participants.