Natural History of Neuronal Ceroid Lipofuscinosis, Batten's CLN6 Diseae

Description

CLN6 is a rare, neurodegenerative disease that causes progressive loss of acquired skills with motor delay, visual loss, seizures and ataxia. The investigators propose a natural history study of this rare disorder since it is currently unknown. It is important to understand disease progression in CLN6 disease to be able to judge therapeutic efficacy as emerging therapies like gene therapy become available.

Conditions

Batten Disease, CLN6

Study Overview

Study Details

Study overview

CLN6 is a rare, neurodegenerative disease that causes progressive loss of acquired skills with motor delay, visual loss, seizures and ataxia. The investigators propose a natural history study of this rare disorder since it is currently unknown. It is important to understand disease progression in CLN6 disease to be able to judge therapeutic efficacy as emerging therapies like gene therapy become available.

Natural History Study of Batten's CLN6 Disease

Natural History of Neuronal Ceroid Lipofuscinosis, Batten's CLN6 Diseae

Condition
Batten Disease
Intervention / Treatment

-

Contacts and Locations

Columbus

Nationwide Children's Hospital, Columbus, Ohio, United States, 43205

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.

For general information about clinical research, read Learn About Studies.

Eligibility Criteria

  • * Confirmed diagnosis of genotypic diagnosis of CLN6
  • * Patients who do not have a genotypic diagnosis of CLN6

Ages Eligible for Study

2 Years to 25 Years

Sexes Eligible for Study

ALL

Accepts Healthy Volunteers

No

Collaborators and Investigators

Emily de los Reyes,

Study Record Dates

2025-01