RECRUITING

Clinical and Neuropsychological Investigations in Batten Disease

Study Overview

This clinical trial focuses on testing the efficacy of different digital interventions to promote re-engagement in cancer-related long-term follow-up care for adolescent and young adult (AYA) survivors of childhood cancer.

Description

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.

Official Title

Clinical and Neuropsychological Investigations in Batten Disease

Quick Facts

Study Start:2004-08
Study Completion:2025-07
Study Type:Not specified
Phase:Not Applicable
Enrollment:Not specified
Status:RECRUITING

Study ID

NCT01873924

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

Ages Eligible for Study:Not specified
Sexes Eligible for Study:ALL
Accepts Healthy Volunteers:No
Standard Ages:CHILD, ADULT, OLDER_ADULT
Inclusion CriteriaExclusion Criteria
  1. * child or adult with any form of Batten disease
  2. * parent or legal guardian of a child or adult with any form of Batten disease
  1. Pregnancy or breastfeeding
  2. Severe psychiatric disorders
  3. Active substance abuse
  4. Unstable medical conditions
  5. Inability to comply with study requirements

Contacts and Locations

Study Contact

Amy Vierhile, RN PNP
CONTACT
(585)275-4762
amy_vierhile@urmc.rochester.edu

Principal Investigator

Jonathan W Mink, MD PhD
PRINCIPAL_INVESTIGATOR
University of Rochester

Study Locations (Sites)

University of Rochester
Rochester, New York, 14642
United States

Collaborators and Investigators

Sponsor: University of Rochester

  • Jonathan W Mink, MD PhD, PRINCIPAL_INVESTIGATOR, University of Rochester

Study Record Dates

These dates track the progress of study record and summary results submissions to ClinicalTrials.gov. Study records and reported results are reviewed by the National Library of Medicine (NLM) to make sure they meet specific quality control standards before being posted on the public website.

Study Registration Dates

Study Start Date2004-08
Study Completion Date2025-07

Study Record Updates

Study Start Date2004-08
Study Completion Date2025-07

Terms related to this study

Keywords Provided by Researchers

  • Batten disease
  • NCL
  • Neuronal Ceroid Lipofuscinosis

Additional Relevant MeSH Terms

  • Neuronal Ceroid Lipofuscinosis
  • Neuronal Ceroid Lipofuscinosis CLN1
  • Neuronal Ceroid Lipofuscinosis CLN2
  • Neuronal Ceroid Lipofuscinosis CLN3
  • Neuronal Ceroid Lipofuscinosis CLN5
  • Neuronal Ceroid Lipofuscinosis CLN6
  • Neuronal Ceroid Lipofuscinosis CLN7
  • Neuronal Ceroid Lipofuscinosis CLN8
  • Neuronal Ceroid Lipofuscinosis CLN10
  • Batten Disease