Clinical trialNCT01873924RecruitingObservational

Clinical and Neuropsychological Investigations in Batten Disease

SponsorUniversity of RochesterEnrollment500Batten DiseaseNeuronal Ceroid LipofuscinosisNeuronal Ceroid Lipofuscinosis CLN1Neuronal Ceroid Lipofuscinosis CLN10Neuronal Ceroid Lipofuscinosis CLN2Neuronal Ceroid Lipofuscinosis CLN3+4 more conditions

View the registry record on ClinicalTrials.gov

Summary

The lay summary the sponsor registered on ClinicalTrials.gov.

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.

clinicaltrials.gov ↗

Investigators

The overall officials registered on this study. Names that resolve to a FindMyKOL profile link to it; the rest are shown as registered.

Jonathan W Mink, MD PhD
University of Rochester
Principal Investigator
clinicaltrials.gov ↗

A profile link is shown only when the registered name resolves to a person record with a confident, namesake-checked match; ambiguous names stay unlinked.

Sites

1 registered facility, with the per-site recruitment status where the registry publishes one. ClinicalTrials.gov does not publish per-site enrollment counts.

United States

University of Rochester
Rochester, New York, United States
Recruiting

Site investigator names are published by ClinicalTrials.gov only while a study recruits, so completed studies list sites without them.

Drugs studied

No drug or biological interventions are in our data for this study. It may test a procedure, device or behavioral intervention, or the intervention list isn't in our current snapshot. See the registry record ↗. Why? →

Registration & key dates

Registry attributes as recorded on the ClinicalTrials.gov study record.

Start: 31 Aug 2004
Primary completion: 31 Aug 2035
Completion: 31 Aug 2035
Last update posted: 12 Sept 2025
Registered enrollment: 500
Registry id: NCT01873924

clinicaltrials.gov ↗

Source: ClinicalTrials.gov, via the CTTI AACT database, data as of 4 Nov 2026. Registry facts are shown as registered by the study sponsor; FindMyKOL does not interpret them.