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Surfing for Health Information How do you know who to trust? National Cancer Institute (NCI) Resources Useful Sites LMS & Sarcoma Information Cancer Information Sites Cancer Treatment Centers Drug Information Research Transportation Clinical Trials
Surfing for Health Information
Using the Web, you can learn how an illness is diagnosed, and the latest recommendations for treatment, as well as the research being conducted about it. The problem is finding enough reliable information from reputable sites. Use medical search engines, and health directory and government sites to get better results.
How do you know who to trust?
Is there a doctor reviewing the information on the site? Who is sponsoring the site? [Do a Whois search at www.nsi.com, Network Solutions. It gives the site administration information.] What is the motivation for the site? Health sites that are hawking goods or services often provide biased information. Some sites simply make mistakes. Some sites are better than others for certain subjects. Some search words work better than others to get the information you want. Check the date, some areas are fast-moving and quickly outdated. Seek many opinions, do not limit yourself to one source of information. Change some of the keywords in the search engine windows, do repeated searches. Do not give out personal information to websites; use a hotmail or yahoo or similar email address. Give a phony name, address and other information, if registration is required. ALWAYS talk with your doctor before making medical decisions. Bring to your doctor's a few pages of material, and the URLs. Some doctors think patients who find out about their illnesses are a pain Good doctors recognize that you not only are helping by gathering information, but also educating yourself and taking charge of your decisions. In summary, you are acting responsibly.
National Cancer Institute (NCI) Resources
The National Cancer Institute (NCI) has booklets and other materials for patients, health professionals, and the public. These publications discuss types of cancer, methods of cancer treatment, coping with cancer, and clinical trials. Some publications provide information on tests for cancer, cancer causes and prevention, cancer statistics, and NCI research activities. NCI materials on these and other topics may be ordered online from the NCI Publications Locator Service at http://publications.nci.nih.gov or by telephone from the Cancer Information Service toll free at 1-800-4-CANCER, or by email from CancerMail (cancermail@cips.nci.nih.gov) , or by writing to this address: National Cancer Institute Office of Communications 31 Center Drive, MSC 2580 Bethesda, MD 20892-2580 or from CancerFax, which includes NCI information about cancer treatment, screening, prevention, genetics, and supportive care. To obtain a contents list, dial 301-402-5874 or 1-800-624-2511 from a touch-tone telephone or fax machine hand set and follow the recorded instructions. A list of organizations and websites that offer information and services for cancer patients and their families is available on CancerNet (http://cancernet.nci.nih.gov/cancerlinks.html). PDQ Physician's Data Query: a service of the NCI. (http://cancernet.nci.nih.gov/pdqfull.html) PDQ is a computer system that gives up-to-date information on cancer and its prevention, detection, treatment, and supportive care. PDQ is a service of the National Cancer Institute (NCI) for people with cancer and their families and for doctors, nurses, and other health care professionals. PDQ can be used to learn more about current care for patients with cancer. You may find it helpful to discuss this information with your doctor, who knows you and the facts of your disease and can help answer questions and ease concerns. PDQ can also provide the names of additional health care professionals who can help you and your family during the treatment of your disease. If you want to know more about cancer and how it is treated, or if you wish to know about clinical trials for your type of cancer, you can call the NCI's Cancer Information Service at 1-800-422-6237, toll free. A trained information specialist can talk with you and answer your questions. Monday through Friday, 9:00 a.m to 4:30 p.m. CancerNet - Provides quick and easy access to all cancer-related information, including information on clinical trials. International Cancer Information Services - Information on international cancer resources. There are many other places where people can get materials and information about cancer treatment and services. Local hospitals may have information on local and regional agencies that offer information about finances, getting to and from treatment, receiving care at home, and dealing with problems associated with cancer treatment.
Useful Sites
HealthAtoZ.com - www.healthatoz.com - directory site Achoo - www.achoo.com - health information MedWeb - www.medwebplus.com - health information PubMed - www.ncbi.nlm.nih.gov/PubMed/ - medical journal articles MedlinePlus - www.medlineplus.gov - medical articles, consumer health HealthFinder - www.healthfinder.gov - govt directory site Medscape - www.medscape.com - medical articles, drugs, patient education Food & Drug Admin. - www.fda.gov - drugs Pharmacology Databases - www.mednets.com/spharmac.htm - search engines, drugs National Center for Complementary and Alternative Medicine - http://nccam.nih.gov - alternative medicine National Cancer Institute - http://www.nci.nih.gov - major cancer information center, clinical trials, doctor and patient information Sites set up by consumers' or professionals' organizations are often very reliable. These would include sites like: The Sarcoma Foundation - www.sarcomaalliance.com The American Cancer Society - www.cancer.org Commercial Health News Services: Reuters Health - www.reutershealth.com CBSHealthWatch - www.healthwatch.medscape.com Scam watchdogs: Federal Trade Commission - www.ftc.gov - To file a complaint. QuackWatch - www.quackwatch.com - Judgements of alternative medicine cons.
LMS & Sarcoma Information
LMS Page at ACOR - http://www.acor.org/l-m-sarcoma.html Excellent site for the LMS list...email postings. Approx 500 members in list. Support & current information. LMS and other Soft Tissue Sarcomas - http://hometown.aol.com/ginjarv/LMSsts_html.htm Good Links Sarcoma Alliance - http://www.sarcomaalliance.com Hope Circle - http://www.sandyserva.com/hopecircle/ Home of the Sarcoma Fighters (SARCOMA list) Sarcoma.net - http://www.sarcoma.net/ Dr. Demetri's Site U of Pennsylvania OncoLink Sarcoma Page - http://oncolink.upenn.edu/ Washington Cancer Institute - http://www.sarcoma.org/ Dr. Steve Fadem's Sarcoma Page - http://nephron.com/sarcoma.html Melanoma and Soft Tissue Sarcoma - http://www.stsp.org/ Life Raft Group site The site for GIST, c-kit+ or CD117+ to find out about Glivec [STI-571]. Don Miller's site - www.geocities.com/leiomyo ACOR's Sarcoma Cancerlink - www.acor.org/Cancerlist/sarcoma.html
Cancer Information Sites
The Bloch Site - www.blochcancer.org Excellent site. Should be seen and the free book read by every cancer patient. Gives attitude and general rules for surviving cancer. LMS Page at ACOR - www.acor.org/l-m-sarcoma.html Excellent site for the LMS list...email postings. Approx 500 members in list. Support & current information. National Cancer Institute - www.nci.nih.gov Excellent site. Use the PDQ treatment files to find out about your cancer. There is a plenitude of information at all levels. The National Cancer Institute's Clinical Trial Search Form - http://cancernet.nci.nih.gov/trialsrch.shtml ACOR (Assoc. of Cancer Online Resources) To Search the Archives http://listserv.acor.org/ LMS Page at ACOR - www.acor.org/l-m-sarcoma.html Sarcoma Foundation - www.sarcomaalliance.com [Social, educational, patient's organization.] CancerWeb - www.graylab.ac.uk/cancerweb/trials.html Excellent source of cancer clinical trial information Cancer - www.cyberdiet.com/modules/ca/outline.html This site has great all around cancer information, including diet. [Bruce] Oncolink.com - www.oncolink.com [University of Pennsylvania Cancer Center] www.cancerbackup.org.uk [Cancer Site, in England [UK]] LearnAboutCancer - http://cancersource.com/LearnAboutCancer/core/index.cfm?DiseaseID=26 Beginners, Intermediates and Advanced. You can find out that latest trials by going to research frontiers. Lots of information on this site about treatments too. [Rosalie] PubMed or Medline - http://www.ncbi.nlm.nih.gov/entrez/query.fcgi Free searches of US National Library of Medicine...medical journal articles, and abstracts. Complementary & Alternative Medicine - www.nlm.nih.gov/nccam/camonpubmed.html Click the cam logo near the bottom of the page. Medscape's Oncology Section - http://oncology.medscape.com Medscape Oncology Home Page - http://www.medscape.com/Home/Topics/oncology/oncology.html [Excellent site for medical articles, summaries, new advances, patient education.] Memorial Sloan Kettering - www.mskcc.org/patients_n_public/clinical_trials/browse_clinical_trials/index.cfm" Browse Clinical Trials European Organization for Research and Treatment of Cancer - www.eortc.be [The home page of the EORTC.. You can get a list of trials being conducted by it, as well as phone numbers and email addresses of its members. [Ophir]] American Cancer Society - www.cancer.org CancerWeb - www.graylab.ac.uk/cancerweb/trials.html [Excellent source of cancer clinical trial information] CancerNet: National Cancer Institute - http://cancernet.nci.nih.gov CancerNet: PDQ - http://cancernet.nci.nih.gov/pdqfull.html [NCI's Comprehensive Cancer Database] CenterWatch.com - www.centerwatch.com/patient/results/default.asp direct link for the database of results of clinical trials [Detailed database tracks hundreds of trial results of drugs in clinical development since 1/2000. Phases I - IV & post-marketing results. Search by therapeutic area, drug name, generic name, company. [Beth]] American Medical Association - www.ama-assn.org American Botanical Council - www.herbalgram.org The Doctors Doctor - www.thedoctorsdoctor.com/f_home.html Cancer Information and Support Network (Links) - www.cancer-info.com/ Interpret Pathology Reports (possibly for a fee) Steve Dunn's Cancer Guide - www.cancerguide.org/mainmenu.html National Comprehensive Cancer Network - www.nccn.org/ Cancer Source - www.cancersource.com/ American Society of Clinical Oncology - www.asco.org National Coalition for Cancer Survivorship - www.cansearch.org/
Cancer Treatment Centers
Dana-Farber Cancer Institute - www.dana-farber.org MD Anderson Sarcoma Center - www.mdanderson.org/centers/sarcoma Memorial Sloan-Kettering Cancer Center - www.mskcc.org Mass General Hospital - www.mgh.harvard.edu Univ. of Michigan Cancer Center - www.cancer.med.umich.edu FDA's Oncology Tools - www.fda.gov/cder/cancer University of Pennsylvania - www.oncolink.upenn.edu
Drug Information
Rx.com - www.rx.com Directory of Prescription Drug Patient Assistance Programs - www.phrma.org/patients Medscape Drug Info - http://promini.medscape.com/drugdb/search.asp Angiogenesis Inhibitors for Cancer Treatment: The Basics - http://pharmacology.about.com/health/pharmacology/library/weekly/aa980518.htm Rx List - www.rxlist.com The Internet Drug Index (good) The Angiogenesis Foundation - www.angio.org Complementary & Alternative Medicine - www.nlm.nih.gov/nccam/camonpubmed.html
Research
Reference Desk - www.refdesk.com/index.html Research Anything! Quackwatch - www.quackwatch.com Guide to Health Fraud National Center for Complimentary and Alternative Medicine - http://nccam.nih.gov - (good) Office of Rare Diseases - http://rarediseases.info.nih.gov/ord CancerProtocol.com - http://www.cancerprotocol.com
Transportation
Providers of Free Air Transport For Cancer Patients Corporate Angel Network - www.corpangelnetwork.org - Tel. 914-328-1313 Cancer Air Flights - www.gwccs.org/flights.html National Patient Air Transport Health Helpline - www.npath.org AirLifeLine temporary URL - www.airlifeline.org - They use volunteer pilots and their own private planes to transport patients to medical appointments.
Clinical Trials
National Cancer Institute's Clinical Trial Search Form CancerWeb - excellent source of cancer clinical trial information Acurian will send you clinical trial information alerts on trials that conform to what you requested information on. CenterWatch Clinical Trials Listing Service Biospace Clinical Development Search (drug companies clinical trials)

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