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The following excerpt is taken from Appendix A of Cancer Clinical Trials: Experimental Treatments & How They Can Help You by Robert Finn, copyright 1999, published by O'Reilly & Associates, Inc. For book orders/information, call (800) 998-9938. Permission is granted to print and distribute this excerpt for noncommercial use as long as the above source is included. The information in this article is meant to educate and should not be used as an alternative for professional medical care.

Organizations

The National Cancer Institute (NCI)
Phone: (800) 4-CANCER
Web: http://www.nci.nih.gov/
The largest of the seventeen institutes that comprise the National Institutes of Health (NIH), which in turn is part of the Department of Health and Human Services. Located in Bethesda, Maryland, the NCI is the nation's premier center for cancer research. At their toll-free number you can order books, pamphlets, and videos on many cancer-related subjects, and you can request a listing of all clinical trials for your condition. NCI also operates the Physicians Data Query (PDQ) web site (discussed in the section on Internet sites below).

Office for Protection from Research Risks (OPRR)
Division of Human Subject Protections
National Institutes of Health
6100 Executive Blvd., Ste. 3B01 (MSC 7507)
Rockville, MD 20892-7507
Phone: (301) 496-7041
Fax: (301) 402-0527
Web: http://www.nih.gov:80/grants/oprr/oprr.htm
OPRR is charged with enforcing federal regulations regarding clinical trials.

Food and Drug Administration (FDA)
Web: http://www.fda.gov/
If you have difficulties with a pharmaceutical company's conduct of a clinical trial, you can seek a resolution with the Center for Drug Evaluation and Research.

Center for Drug Evaluation and Research
Web: http://www.fda.gov/cder/
In particular, you may want to contact James C. Morrison, the CDER Ombudsman.

James C. Morrison, CDER Ombudsman (HFD-1)
5600 Fishers Lane
Rockville, MD 20857
Phone: (301) 594-5443
Fax: (301) 827-4312
Email: morrisonj@cder.fda.gov
Web: http://www.fda.gov/cder/ombud.htm

FDA's Consumer Complaint Coordinators
Web: http://www.fda.gov/opacom/backgrounders/problem.html
You'll find a complete list of phone numbers for each state at this site.

American Cancer Society
Phone: (800) ACS-2345
Web: http://www.cancer.org/
The nation's premier cancer charity. Through its 3,400 local offices, the ACS provides support groups and many other services for people with cancer.

Books

Bazell, Robert. Her-2: The Making of Herceptin, a Revolutionary Treatment for Breast Cancer. New York: Random House, 1998. NBC science correspondent Robert Bazell has written a gripping account of the development of Herceptin, including detailed descriptions of the clinical trials and many of the courageous participants.

Dorland, W. A. Newman, editor. Dorland's Illustrated Medical Dictionary. W B Saunders Co., 1994. Valuable technical information.

Finn, Robert. Cancer Clinical Trials: Experimental Treatments & How They Can Help You. O'Reilly & Associates, Inc., 1999. A guide through finding, and evaluating participation in, cancer clinical trials and the book from which this patient center was developed.

Harrington, Anne, editor. The Placebo Effect: An Interdisciplinary Exploration. Cambridge, Massachusetts: Harvard University Press. Also, a thorough discussion of the placebo effect.

Jones, James H. Bad Blood: The Tuskegee Syphilis Experiment. New York: Free Press, 1993. This is the second edition of the definitive book on the Tuskegee experiment.

Lerner, Michael. Choices in Healing: Integrating the Best of Conventional and Complementary Approaches to Cancer. MIT Press, 1994. This book will give you a thorough overview of integrating conventional and complementary approaches to cancer treatments. It's also available online, in its entirety, at: http://www.commonweal.org/choicescontents.html

Lifton, Robert Jay. The Nazi Doctors: Medical Killing and the Psychology of Genocide. New York: Basic Books, 1986. This book contains a detailed discussion about the Nazi medical experiments and the context in which they occurred.

Murphy, Gerald P., MD, Lois B. Morris, and Dianne Lange. Informed Decisions: The Complete Book of Cancer Diagnosis, Treatment, and Recovery. New York: Viking Penguin Books, 1997. Sponsored by the American Cancer Society, Informed Decisions is an excellent source of information on specific cancers, their standard treatments, and their likely outcomes.

Schine, Gary, with Ellen Berlinsky. Cancer Cure: How To Find And Get The Best There Is (formerly titled If the President Had Cancer…). New York, Kensington Books, 1994. These two books will help you research your medical condition and make informed decisions on your care.

Shapiro, Arthur K., and Elaine Shapiro. The Powerful Placebo: From Ancient Priest to Modern Physician. Baltimore: Johns Hopkins University Press, 1997. A thorough discussion of the placebo effect.

Stedman, Thomas Lathrop. Stedman's Medical Dictionary. Williams & Wilkins, 1995. Valuable technical information.

Thomas, Clayton L., editor. Taber's Cyclopedic Medical Dictionary. Philadelphia: F.A. Davis Co., 1997. Valuable technical information.

Vanderpool, Harold Y., editor. The Ethics of Research Involving Human Subjects: Facing the 21st Century. Frederick, Maryland: University Publishing Group, Inc., 1996. This book contains chapters by eighteen renowned experts on the ethics of clinical trials.

Internet resources

Association of Cancer Online Resources
Web: http://www.medinfo.org/
Has the best collection of email discussion lists related to cancer.

CancerGuide
Web: http://www.cancerguide.org/
Maintained by cancer survivor Steve Dunn. CancerGuide contains basic information about cancer, links that will help you research your condition, information on clinical trials, and inspirational patient stories.

The CenterWatch Clinical Trials Listing Service
Web: http://www.centerwatch.com
Contains a searchable database of 7,500 current clinical trials in all areas of medicine, including cancer.

Code of Federal Regulations, Title 45, Part 46
"Protection of Human Subjects,"
Web: http://www.med.umich.edu/irbmed/FederalDocuments/hhs/
HHS45CFR46.html

Here you'll find the full text of the regulations that govern all clinical trials in the US.

EurekAlert
Web: http://www.eurekalert.org/
For searchable collections of cancer related news releases from academic institutions.

Excite Newstracker service
Web: http://nt.excite.com/
To find current newspaper and magazine articles on any topic.

Internet Grateful Med
Web: http://igm.nlm.nih.gov/
This is one way to access Medline, an index of the entire world's medical literature from 1966 to the present.

Newswise
Web: http://www.newswise.com/
See EurekAlert.

Patient Advocacy Home Page
Web: http://uhec.udmercy.edu/picct/risinglo.htm
Maintained by Lydia Cunningham Rising. Along with several interesting articles--including one on "How to Talk (Back) to Your Doctor"--the site gives you the opportunity to complete a survey on your experiences with and attitude toward cancer clinical trials.

Physicians Data Query (PDQ)
Web: http://cancertrials.nci.nih.gov/
The single best way to find cancer clinical trials. Maintained by NCI and PDQ, it is an easily searchable registry of more than 1,500 clinical trials in cancer.

PubMed
Web: http://www4.ncbi.nlm.nih.gov/PubMed/
Another way to access Medline.

MediStudy.com
3-304 Stone Road West, Suite 337
Guelph ON, Canada N1G 4W4
Telephone: (519) 827-9203/(877) 702-6334
Fax : (519) 827-9063
Email: contact@medistudy.com
Web: www.medistudy.com
A source of clinical trial information for Canada, including a searchable database of trials recruiting patients.

WebMD
Web: http://my.webmd.com
A collection of communities of people with serious health concerns. Several of these communities relate to specific types of cancer.

Usenet newsgroups related to cancer

  • alt.support.cancer
  • alt.support.cancer.breast
  • alt.support.cancer.prostate
  • alt.support.cancer.testicular
  • sci.med.diseases.cancer

Research Services

The Health Resource, Inc.
933 Faulkner Street
Conway, AR 72032
Phone: (501) 329-5272 or (800) 949-0090
Web: http://www.thehealthre source.com/

MEDcetera, Inc.
Phone: (800) 748-6866
Email: pgeyer@netropolis.net
Web: http://www.net ropolis.net/pgeyer/

Schine On-Line Services
39 Brenton Avenue
Providence, RI 02906
Phone: (401) 751-0120 or (800) 346-3287
Email: mailto:schine@findcure.com
Web: http://www.findcure.com/

Help with travel and lodging

ACS Hope Lodges
Phone: (800) ACS-2345

Air Care Alliance
Phone: (888) 662-6794

Corporate Angel Network
Phone: (914) 328-1313

National Association of Hospital Hospitality Houses
Phone: (800) 542-9730

National Patient Air Transport Helpline (NPATH)
Phone: (800) 296-1217

Ronald McDonald Houses
Phone: (312) 836-7100


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