Other Resources
Information: Some Good, Some Bad
Being diagnosed with a brain tumor is like suddenly parachuting into a foreign country. You know neither the language nor the geography. You might try to learn both very quickly. But with a brain tumor invading, you don't have the time to learn the language and the topography of the medical realm - at least not well enough to do you much good.
The up-to-date information available on the internet is an extremely useful – nowadays vital – tool for education and research by professionals and laypersons alike. But you must learn to differentiate between a scientific fact and a marketing tactic of physicians, medical centers or pharmaceutical companies. With managed care and cutbacks in Medicare, incomes within the medical profession have plummeted. Treatment costs have increased with inflation, as well as expensive technology and malpractice premiums.
Doctors and hospitals, in fierce competition with each other, have turned to marketing in order to advertise their services. The internet is a primary method of inexpensive advertising. Creating a web page costs close to nothing and the medical experts will couch their information with groundless assurances in their treatment methods just to lure in potential patients. Individuals who are seriously ill will grasp desperately at any possibility of a cure. Patients with brain tumors, cardiac problems and cancers are prime targets for these marketing efforts.
How is anyone to separate the good information from the bad? Unless you are a health care professional in the field of brain tumors, this will be an arduous task. As the first clue, always consider the source. Go to web sites of respected academic medical centers (Harvard, NYU), the government (NIH, NCI), various brain tumor foundations (American Brain Tumor Association, the Brain Tumor Society and this one), and private sites. Any and all of these will have information to get you started on a "crash course" about brain tumors.
Additional Resources by Topic:
Basic Information
Wikipedia: The Free Encyclopedia provides basic information on brain tumors from causes and classifications to treatment and prognosis.
Childhood Brain Tumors
CureSearch for pediatric cancer centers
Children's Hospice International
Clinical Trials
These studies involve cancer patients in helping doctors determine the safety and effectiveness of various treatments, diagnoses, screening systems, preventive measures and methods for improving the quality of life of cancer patients. Participating in these trials aids doctors in discovering the most effective techniques in fighting cancer.
The National Cancer Institute provides this guide to clinical trials, as well as information on insurance coverage of the patient care costs associated with clinical trials.
The Trial Matching & Referral Service at The University of Pennsylvania Cancer Center allows patients to complete a single questionnaire and determine their eligibility to participate in any ongoing clinical trials.
VirtualTrials.com records and analyzes the outcomes of your treatments, enabling researchers to quickly identify which treatments or combinations of treatments look the most promising.
Centerwatch.com lists more than 41,000 active industry and government-sponsored clinical trials; sponsored by company that recruits participants.
Trialscentral.org is the trial listings site of the Center for Clinical Trails and Evidence-Based Healthcare at Brown University Medical Center.
Medlineplus.gov is the National Library of Medicine's consumer site with a link to PubMed, its bibliographic database with citations and abstracts from nearly 4,500 journals world-wide.
Drugs.com is a free advertiser supported drug information site.
Amedeo.com provides free access to medial studies from hundreds of journals supported by unrestricted grants from several drug companies.
GBMtrial.com provides information about Xenova's Phase III clinical trial of Transferrin-CRM107, proposed trade name TransMID(TM), for the potential treatment of non-operable, progressive and/or recurrent glioblastoma multiforme.
Financial Information
The Corporate Angel Network offers free air travel to cancer patients traveling to treatment.
Financial Information for Brain Tumor Patients
NeedyMeds.com provides information on how low-income brain tumor patients can obtain medication at reduced charge (sometimes even free).
The National Patient Air Transport HELPLINE offers free and discounted air travel to patients in need of transportation for medical reasons.
Help With Health Care
Caregiver.com is a magazine devoted to caregivers.
Partners In Health - Bikur Cholim is "a multi-faceted medical and healthcare related agency dedicated to helping patients and their families receive the full complement of healthcare services."
The Visiting Nurses Association of America helps patients find local Visiting Nurses Associations, which bring home health care to individuals in their respective communities.
Hospices
Children's Hospice International provides a network of support and care for children with life-threatening conditions and their families.
The Hospice Patients Alliance provides information on selecting, evaluating and making use of hospices.
The Hospice Web enables you to search for a hospice near you.
Hospitals and Treatment Centers
The American Cancer Society offers this database allowing you to locate a hospital or cancer treatment facility near you, and this form to help you locate a pediatric cancer center.
The American Hospital Directory provides on-line data for more than 6,000 hospitals.
The Joint Commission on Accreditation of Healthcare Organizations helps you locate and evaluate hospitals throughout the U.S.
Neurosurgery.com's search form helps you find medical centers (as well as other resources) throughout the United States.
U.S. News ranks the top hospitals in America.
Medical Research
PubMed enables users to search medical journals for articles of interest.
Patient Advocacy
Ken Schueler, Director of HKS Patient Advocates, has provided services to patients and families. He was a panelist at Brain Tumor Awareness Day in 2004 and 2005 and a past Special Guest Speaker at The Brain Tumor Foundation's Educational Forum Series. The Brain Tumor Foundation is providing this link as a suggested resource for information purposes.
Statistics
The Central Brain Tumor Registry of the U.S.
The National Institutes of Health
Studies
The Brain Tumor Family Study from M.D. Anderson Cancer Center, is aimed at learning more about a possible gene(s) related to this disease — and then identifying a genetic link among family members of brain tumor patients and identifing genetic factors associated with brain tumors. Participants do not need to be patients of M.D. Anderson Cancer Center.
Support Resources
The National Association of Social Workers can help locate a clinical social worker near you.
Click here to find a brain tumor support group.