Brain Tumor Survivor's Guide
to the Internet
Introduction
Want to keep up on the latest information about brain tumors? If you have access to a computer and a modem, you can jump on to the Internet and tap into a wealth of information and support. A list of search engines (listed on the last page) will help you find other sites in the Internet as well.
American Brain Tumor Association's Web Site
The American Brain Tumor Association has an extensive web site on the Internet. At that site you can access information about the latest treatments, research, support resources and ABTA events. You can find us at: http:/Iwww.abta.org
BRAINTMR: The World's Largest Brain Tumor Support Group
Over 900 people now interact through this e-mail discussion group including patients, family members, neuroscientists, social workers, and representatives of the American Brain Tumor Association. This list was originated by brain tumor survivor, Samantha Scolamiero, and is now maintained by a BRAINTMR volunteer.The BRAINTMR list is a forum to discuss topics related to all types of brain tumors whether benign or malignant. Information and experiences are shared among brain tumor patients, their families and supporters, all kinds of concerned medical professionals, medical educators, and researchers who study brain tumor growth or treatment. Over 15% of subscribers are medical professionals who learn about a broad variety of patient needs and thoughts.
To subscribe to this list, send e-mail to LISTSERV@mitvma.mit.edu. In the body of the message type SUBSCRIBE BRAINTMR followed by your real name. For example, SUBSCRIBE BRAINTMR Jane Q. User. Leave the subject of the e-mail blank or type "none." To unsubscribe from the list, send the command UNSUBSCRIBE BRAINTMR in e-mail to LISTSERV@mitvma.mit.edu. Send all list related commands to LISTSERV@mitvma.mit.edu. For assistance, send the command HELP. Send all articles to BRAINTMR@mitvma.mit.edu.
BRAINTMR also hosts a chat room on America Online. To get there from the main AOL Menu: go to People Connections, click Find A Chat, click Enter A Private Chat, and type in the full word, braintumor. The screen will tell you how many other people are in the chat room.
Acoustic Neuroma Association (ANA)
http://ANAusa.org
The ANA has a homepage with information about the organization and the services they provide.
Al Musella's list of Clinical Trials and Noteworthy Treatments for Brain Tumors
http://www.virtualtrials.com
This is an extensive listing of brain tumor protocols, a "Virtual Clinical Trial" for those wishing to share their treatment experiences, and a bibliography (the books can be purchased online). The site is maintained by Al Musella, DPM.
Brain Tumor Support Group of Maine http://www.megalink.net/~bonneau This site provides information about the purpose of the support group as well as a meeting schedule and contacts for more information.
CancerNet
http:/Icancernet.nci.nih.gov
An information database of the National Cancer Institute, CancerNet provides extensive information about various forms of cancer, cancer-related treatments, clinical trials, the ability to perform your own PDQ Searches online (see PDQ), the text of many NCI educational fact sheets and booklets, as well as the CancerLit collection of professional journal articles.
CenterWatch - Clinical Trials Listing Service
http://www.centerwatch.com
These trials are listed by pharmaceutical companies and physicians conducting research at major medical centers and private research centers. Patients can use this site to learn about investigational therapies and identify ongoing clinical research trials. The information is provided by a publishing company as an information source to patients.
Childhood Brain Tumor Foundation
http://www.mnsinc.comlcbtf/
This homepage provides information about the Children's Brain Tumor Foundation and the services they offer.
The Cleveland Clinic Foundation
http://www.clevelandclinic.org/neurosurgery.
The Brain Tumor Center's Website provides information about the Cleveland Clinic Foundation's clinical programs, research and physicians as well as a link to the MedHelp Neurology Forum. The CCF Gamma Knife homepage is http://www.neus.ccf.org/gammaknife provides information about the Gamma Knife procedure, team, and the neurological disorders treated.
Duke University Medical Center
http://www.canctr.mc.duke.edu/pno
or http://www.canctr.mc.duke.edu/pno-dir/pnoteam.htm
The Division of Pediatric Neuro-Oncology homepage provides information about services offered by this division, which is dedicated to treating children and young adults with brain and/or spinal cord tumors.
Elekta Instruments, Inc.
http://www.elekta.com
This homepage provides information about the Gamma Knife and its manufacturer, Elekta Radiosurgery. The site includes a listing of worldwide Gamma Knife locations and an extensive bibliography of articles/books addressing use of the Gamma Knife.
Food and Drug Administration
http:Hwww.fda.gov
This web site posts FDA news releases, consumer information, the magazine of the FDA (FDA Consumer) online, and offers access to select FDA documents and data.
Friends Network Funletter
http://www.friendsnetwork.org
The Friends Network publishes a Funletter which is a national activities letter for kids and families with cancer.
Healthfinder
http://www.healthfinder.gov
This government web site offers consumer information from federal, state, and local agencies as well as not-for-profit organizations and universities.
Institute for Clinical PET
http://www.ICPPET.org/sitelist.html
An international listing of PET (Positron Emission Tomography) centers is available at this site.
International Radiosurgery Support Association http://www.irsa.org
This site offers information about radiosurgery, what one might experience on the day of treatment, common types of tumors treated and links to related organizations.
Johns Hopkins Stereotactic Radiosurgery
http://www.med.jhu.edu/radiosurgery
This site provides information about the stereotactic radiosurgery program at Johns Hopkins Medical Institutions. Included are indications for use, the treatment process and information about the programs' medical staff.
Massachusetts General Hospital http://neurosurgery.mgh.harvard.edu/nonc-hp.htm
A special neuro-oncology home page provides information specific to brain tumors.
Medhelp International
http://medhlp.netusa.net/
An extensive brain tumor library is available on MedHelp International, including ABTA publications and announcements. Managed in part by the parent of a brain tumor survivor, MedHelp International contains information about brain tumors and treatments and brain tumor clinical trials. The site also offers a Neurology Forum where patients can ask questions.
Medical Ear Institute, P.L.L.C
http://www.michiganear.com
This site provides information about the Medical Ear Institute and articles on acoustic neuroma surgery and intraoperative facial nerve integrity monitoring.
Medicine Program
http://www.medicineprogram.com
The Medicine Program assists patients, who may qualify, to enroll in patient assistance programs. There is a minimal charge for their service. For more information about this program visit their website.
Medline
http://igm.nlm.nih.gov
The US National Library of Medicine now offers free access to Medline via the internet. This database contains nearly 9 million citations and abstracts from
approximately 4,000 medical journals. Easy-to-use prompts walk you through a medical literature search. For a search by topic, one enters the key words for which you are searching, indicate the years you wish to search, and if you would like to retrieve the abstracts of the articles.
Mental Health Net Self-Help Sourcebook Online
http://www.cmhc.com/selfhelp/
Search this site for information about national and model self-help support groups for different illnesses, disabilities and bereavement situations, self-help clearinghouses, national organizations and self-help group resources.
National Association of Charitable Aviators (Air Care Alliance) http://www.angelflightfla.org/aircareall.org/acahome.html
This site offers information about state and local organizations and contacts which offer either low cost or no cost air transportation to treatment.
National Cancer Institute Pediatric Oncology Branch http://wwwicic.nci.nih.gov/pedpage/PedBrHomeR.html This homepage provides patients, families, and physicians with an overview of the treatment available for children with cancer, and of the research conducted at the Pediatric Oncology Branch of NCI.
National Childhood Cancer Foundation (NCCF) http://www.nccf.org/
NCCF supports pediatric cancer treatment and research projects in the U.S., Canada and Australia. Site describes NCCF and offers a listing of CCG clinical cooperative group protocols.
National Health Information Center (NHIC) http://nhic-nt.health.org
The NHIC is a government sponsored health information referral service. They direct patients and medical professionals to organizations able to help them with the information they are looking for.
National Neurofibromatosis Foundation, Inc.
http://www.nf.org
Information about neurofibromatosis and the National Neurofibromatosis Foundation can be obtained on their home page.
NeedyMeds
http://www.needymeds.com
This website provides information about pharmaceutical companies that have special programs to provide medications to those in financial need.
New York University Department of Neurosurgery http://mcnslO.med.nyu.edu
Offers descriptions of the NYU neurosurgery clinical divisions, research, residency and fellowship programs, and other information.
Office of Alternative Medicine (OAM) at the National Institutes of Health
http://altmed.od.nih.gov
The OAM facilitates and conducts biomedical research. Their website offers information about various alternative treatments.
Oncolink
http://cancer.med.Upenn.edu
Oncolink is an extensive catalogue of cancer-related information, including brain tumor information. ABTA publications and announcements are also included.
PDQ (physiciants Data Query) Searches
http://www.cancernet.nci.nih.gov related clinical trials in the US as well as PDQ is an extensive database of cancer- overseas. Listing on PDQ is voluntary, however, the database contains over 200 brain tumor clinical trials sponsored by NCI, NIH, ph armaceutical companies, and individual institutions. If you wish to limit Your search to a tumor-type more specific than that allowed by the online program, call the Cancer Information Service at (800) 422 . -6237. Both means of access offer a physician's version (fairly technical) and a patient version (definitions provided). Interestingly, the database also includes a few meningioma and pituitary tumor clinical trials.
Physician Select
http://www.ama-assn-org
The American Medical Association's Web site allows consumers to find information about listed physicians using the AMA physician database.
Pituitary Tumor Network Association http://www.pituitary.com
You can access information about the services of the Pituitary Network Association and samples of the material they provide by contacting this site.
Southwest Oncology Group (SWOG) http://www.oo.saci.org
The SWOG has a web page which lists details about their clinical trials.
Tap Holdings, Inc. Oncology Clinical Studies Web Site http://www.tapholdings.com
Information about brain tumors, an explanation of the process of angiogenesis, and information about the TAP Holdings clinical trial testing their angiogenesisinhibitor (TNP-470) is offered at this company's web site.
University of Minnesota Hospital Department of Neurosurgery
http://www.neuro.umn.edu/
This web site offers a description of the clinical trials available at the University of Minnesota and directions for obtaining additional information.
University of Southern California Department of Neurosurgery (ANGEL) http://www.usc.edu/hsc/neurosurgery/inquiries.html
Provides answers to World Wide Web users about brain tumors.
Von Hippel-Lindau Disease
http:/Ineurosurgery.mgh.harvard.edu/vhl-f a/
Information about this disease is available from the Family Alliance Homepage.
In addition...
Search engines are web sites which serve as directories to the Internet. You can use a search engine to locate sites addressing a topic of interest to you, to find an organization or a companv's web site, or to find the address of a web site you lost. Since each "engiirie" searches a little differently, their results vary. Place your search on two or three search engines to find the full range of web sites available to you.
To use a search engine, type its address into your browser's "location" box then click "enter." Because search engine pages are graphic-heavy, they will take a few moments to load. Although each search engine site varies a bit, all contain a blank box into which you type the key words for your search. Use short, succinct phrases; the words "brain tumor" will find more information than "newest treatments for brain tumors."
Try a few of these search engines using any Internet browser.
General Search Engines
Alta Vista http: / / altavista.digital.com
Excite http: / /www.excite.com
Lycos http: / /www.lycos.com
Yahoo http://www.yahoo.com
Medical Search ]Engine
Achoo http://www.achoo.com
HealthAtoZ http: / /Healthatoz.com
Healthfinder http: / /www.healthfinder.gov
This listing is by no means every site. Once you sign on to one site on the Internet, you will find many other sites to investigate. This is meant to help you get started "surfing the 'net." For more information, send e-mail to: info@abta.org
This information was compiled as a service for brain tumor survivors by the American Brain Tumor Association and is subject to change. Inclusion on this listing does not imply endorsement of any information or services offered at these sites or at the sites to which they may link. Information found on the Internet should not be used to diagnose or treat health problem. Questions about your healthcare should always be addressed to your own healthcare providers.