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Diseases

Genetic and Rare Diseases Information Center (GARD)

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Batten disease


Other Names for this Disease
  • Ceroid lipofuscinosis neuronal 3
  • CLN3
  • Juvenile neuronal ceroid lipofuscinosis
  • Neuronal ceroid lipofuscinosis 3
  • Spielmeyer Sjogren disease
More Names
See Disclaimer regarding information on this site. Some links on this page may take you to organizations outside of the National Institutes of Health.

Research


Clinical Trials & Research for this Disease

  • ClinicalTrials.gov lists trials that are studying or have studied Batten disease. Click on the link to go to ClinicalTrials.gov to read descriptions of these studies.
  • The National Institute of Neurological Disorders and Stroke (NINDS) funds two national human brain banks. These banks provide researchers worldwide with tissue from patients with neurological and psychiatric disorders. 

    The Human Brain and Spinal Fluid Resource Center
    http://brainbank.ucla.edu/

    Harvard Brain Tissue Resource Center
    http://www.brainbank.mclean.org
  • The following organizations provide researchers with nervous system tissues from patients with neurological disorders.

    National Disease Research Interchange (NDRI)
    8 Penn Center
    8th Floor
    Philadelphia, PA 19103
    Toll-free: 1-800-222-NDRI (800-222-6374)
    Telephone: 215-557-7361 
    Fax: 215-557-7154 or 215-557-8187
    Contact Us Web page: http://www.ndriresource.org/Contact_Us/19/
    Web site:   http://www.ndriresource.org/

    Brain Endowment Bank
    University of Miami
    Leonard M. Miller School of Medicine
    Department of Neurology
    1501 NW 9th Avenue
    Room 4013 (D4-5)
    Miami, Florida 33101
    Toll-free: 1-800-UM-BRAIN (800-86-27246)
    Telephone: 305-243-6219
    Fax: 305-243-3649
    Contact Us Web page: http://brainbank.med.miami.edu/x54.xml
    Web site: http://brainbank.med.miami.edu/x7.xml

Patient Registry

  • The Lysosomal Disease Network is a team of doctors, nurses, research coordinators, and research labs throughout the U.S., working together to improve the lives of people with this condition through research. The Lysosomal Disease Network has a registry for patients who wish to be contacted about clinical research opportunities.

    For more information on the registry see: http://rarediseasesnetwork.epi.usf.edu/registry/index.htm
  • ResearchMatch is a free national research registry designed to bring together patients, healthy volunteers and researchers. Anyone from the United States can register with ResearchMatch, and a parent, legal guardian, or caretaker may register on behalf of a volunteer. Researchers from participating institutions use the ResearchMatch database to search for patients or healthy volunteers who meet the study criteria. Many studies are looking for healthy people of all ages, while some are looking for people with specific illnesses. ResearchMatch was developed by major academic institutions across the country and is funded by the National Center for Research Resources (NCRR), a center of the National Institutes of Health (NIH), the primary Federal agency for conducting and supporting medical research. Click on the link to learn more about ResearchMatch.
  • National Batten Disease Registry
    Contact: K. Wisniewski M.D., Ph.D.
    Department of Neurobiology
    NYS Institute for Basic Research
    1050 Forest Hill Road
    Staten Island, NY 10314
    Telephone: 718-494-0600; 718-494-5202
    Fax: 718-698-3803
    E-mail: BattenKW@aol.com

General Clinical Trials & Research

  • NIH Clinical Trials and You is a website developed by the National Institutes of Health (NIH) to help people learn more about clinical trials, why they matter, and how to participate.