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Patient Recruitment

Batten Disease (CLN3)

Have You Been Diagnosed with Batten Disease?

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 CLN3 (Juvenile Neuronal Ceroid Lipofuscinosis, 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 of 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 (Juvenile Neuronal Ceroid Lipofuscinosis, Batten disease)
  • Children with CLN3 (Juvenile Neuronal Ceroid Lipofuscinosis, Batten disease must have parents/guardian for consent

What is involved?

  • All participants will have medical exams 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 conveniently located on the Metro Red Line (Medical Center stop) in Bethesda, Maryland. There is no charge for study-related tests or procedures. Compensation and travel assistance may be provided.

For more information, call:
1-800-411-1222
TTY: 1-866-411-1010
Se habla español

Or go online:
clinicaltrials.gov
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)

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This page last updated on 11/02/2017

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