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Other Names for this Disease
- Ceroid lipofuscinosis neuronal 3
- Juvenile neuronal ceroid lipofuscinosis
- Neuronal ceroid lipofuscinosis 3
- Spielmeyer Sjogren disease
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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. Both banks need brain tissue from Batten disease patients to enable scientists to study the disease more closely.
The Human Brain and Spinal Fluid Resource Center
Neurology Research (127A)
W. Los Angeles Healthcare Center
11301 Wilshire Blvd. Bldg. 212
Los Angeles, CA 90073
24-hour pager: 310-636-5199
Web site: http://www.loni.ucla.edu/uclabrainbank/
Francine M. Benes, M.D., Ph.D.
Harvard Brain Tissue Resource Center
115 Mill Street
Belmont, Massachusetts 02478
Toll-free: 1-800-BRAIN-BANK (800-272-4622)
Web site: 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
Philadelphia, PA 19103
Toll-free: 1-800-222-NDRI (800-222-6374)
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)
Contact Us Web page: http://brainbank.med.miami.edu/x54.xml
Web site: http://brainbank.med.miami.edu/x7.xml
- 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
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.