Skip to main content

Patient Recruitment Home

Current Protocols

Kids in Research

Healthy Volunteers


ResearchMatch (en español)

Participate in Clinical Studies

FAQ About Clinical Studies

Ethics in Clinical Research

Clinical Research Trials and You


Call toll free: 1-800-411-1222
(TTY for the deaf or hard of hearing 1-866-411-1010)
Se habla español.
Or e-mail:


You can search the collection of research studies being conducted at the NIH Clinical Center at Search the Studies. In addition, provides patients, family members, and members of the public easy and free access to information on clinical studies for a wide range of diseases and conditions.

Patient Recruitment

CLN3 or Batten Disease a Genetic Disorder

Batten Disease (CLN3)

images of Batten Disease (CLN3)

diagram depiciting Unaffected carrier father and mother and four children - unaffected 1 in 4 chance, unaffected carrier 2 in 4 chance, and affected 1 in 4 chance

Researchers at the National Institutes of Health (NIH), in Bethesda, Maryland, seek individuals with Juvenile Neuronal Ceroid Lipofuscinosis (CLN3, Batten disease) to participate in a research study. This is a neurodegenerative disease, with typical onset seen in children. Individuals with CLN3 may have symptoms such as visual impairment/blindness, seizures, personality and behavioral changes, dementia and loss motor skills. The main purpose of this research study is to identify markers of disease to better understand CLN3 and how it develops over time.

Who can participate in this study?

  • Any person who has been diagnosed with CLN3 (JNCL, Batten disease)
  • Children with Batten disease (CLN3) must have parents/guardian for consent

What is involved?

  • All participants will have medical exam and imaging studies completed
  • Blood, urine, spinal fluid, and skin biopsy samples may be collected
  • There is no cost for study-related tests or procedures
  • Lodging and domestic travel compensation will be provided

Location: The NIH Clinical Center, America’s research hospital is located on the Metro red line (Medical Center stop) in Bethesda, Maryland.

For more information, contact:
NIH Clinical Center
Office of Patient Recruitment
TTY: 1-866-411-1010
Se habla español

Or go online:
Refer to study #18-CH-0002

Department of Health and Human Services
National Institutes of Health Clinical Center (CC)
Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD)

NOTE: PDF documents require the free Adobe Reader.

This page last updated on 03/07/2019

You are now leaving the NIH Clinical Center website.

This external link is provided for your convenience to offer additional information. The NIH Clinical Center is not responsible for the availability, content or accuracy of this external site.

The NIH Clinical Center does not endorse, authorize or guarantee the sponsors, information, products or services described or offered at this external site. You will be subject to the destination site’s privacy policy if you follow this link.

More information about the NIH Clinical Center Privacy and Disclaimer policy is available at