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Gliomatosis cerebri
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Gliomatosis cerebri is a type of brain cancer.  It is a variant form of glioblastoma multiforme.[3] It is characterized by scattered and widespread tumor cells that can cause the cerebrum, cerebellum, or brain stem to enlarge.[1] Signs and symptoms may include personality changes, memory disturbance, headache, hemiparesis, and seizures.[1][2]  Because this tumor is so diffuse it can be challenging to treat and the prognosis for people with gliomatosis cerebri is generally poor.[1][2]


References
  1. Gliomatosis cerebri. St. Jude's Children's Research Hospital Web site. Available at: http://tiny.cc/KmUgQ. Accessed March 4, 2009.
  2. Chemotherapy as initial treatment in gliomatosis cerebri: results with temozolomide. Levin et al.. Neurology. 2004.
  3. Uddin S, Jarmi T. Glioblastoma multiforme. eMedicine. 2008 Available at: http://emedicine.medscape.com/article/1156220-overview. Accessed March 5, 2009.
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For more information about Gliomatosis cerebri click on the boxes below:
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More Detailed Information (Found 4 resources)
Links where you can find more general information, comprehensive resources, selected full text journal articles, and news updates.

  • General

    • MeSH® (Medical Subject Headings) is a terminology tool used by the National Library of Medicine. Click on the link to view information on this topic.
    • The National Cancer Institute provides the most current information on cancer for patients, health professionals, and the general public.  Click on the link to view information on this topic. 
    • The National Cancer Institute (NCI) provides current information on brain tumors. The NCI conducts and supports cancer research and training and provides cancer information to patients, health professionals, and the general public.
    • PubMed is a searchable database of medical literature and lists journal articles that discuss Gliomatosis cerebri. Click on the link to view a sample search on this topic.
 Disease-Specific Organizations | Umbrella Organizations | Social Networking Websites
Organizations (Found 12 resources)
Groups providing a wide range of services, supportive resources, and information.

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  • Social Networking Websites

    • DNAandU.org is a Web site and blog that collects firsthand stories from people facing issues, making tough decisions, and using genomic (DNA) information in their own healthcare.  Click on the link to learn from their experiences and/or submit your own story.

    • Madisons Foundation
      P.O. Box 241956
      Los Angeles, CA 90024
      Telephone: 310-264-0826
      Fax: 310-264-4766
      E-mail: getinfo@madisonsfoundation.org  
      Web site: http://www.madisonsfoundation.org/  
    • The National Organization of Rare Disorders (NORD) has partnered with Inspire.com to launch an online community for people with rare diseases called The NORD Rare Disease Community. This community connects medical patients, family members, caregivers, and professionals. Click on The NORD Rare Disease Community to learn more.
    • RareShare is an online social hub dedicated to patients, families and healthcare professionals affected by rare medical disorders. Click on RareShare to learn more.
 
Services (Found 2 resources)
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    • Many individuals want to know about healthcare professionals or researchers who have knowledge of their conditions. When a condition is rare, it can be difficult to find someone who has seen many cases. Although there is no list of experts in rare diseases, GARD's How to Find an Expert fact sheet provides several ways to identify healthcare professionals who have experience with a particular condition. Click on the link to access this resource and learn more.

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    • The Parent Technical Assistance Center Network provides a list of the Parent Training and Information Centers in each state. These centers are funded by the United States Department of Education to provide early intervention and special education information and training to parents of children with disabilities from birth to age 26. Click on the link to find the Parent Center in your state.
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Scientific Conferences (Found 2 resources)
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    • RDCRN 3rd Conference on Clinical Research for Rare Diseases, October 2, 2012
      Location: Hilton Washington DC/Rockville Hotel & Executive Meeting Center, Rockville, MD
      Description: Clinical research in rare diseases presents a number of challenges and unique issues that are not usually considered in the training of clinical investigators through existing training programs. Goals of the conference include: Direct instruction of trainees and new investigators in rare disease research methodology; Development of a reusable curriculum/syllabus on rare disease research methodology; Stimulation of ideas regarding the unique issues facing investigators engaged in the study of rare diseases
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Clinical Trials & Research (Found 2 resources)
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    • 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.
  • Patient Registry

    • 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.

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