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CLN3 or Batten Disease a Genetic Disorder
Batten Disease (CLN3)
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
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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)
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This page last updated on 03/07/2019