Clinical Trials Resources Organizations The National Cancer Institute (NCI) Attn: Cancer Information Service 9000 Rockville Pike Bethesda, MD 20892 Hot line: (800) 4-CANCER (800) 422-6237 Fax: (301) 231-6941; CancerFax: (301) 402-5874 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://grants.nih.gov/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 1599 Clifton Road NE Atlanta, GA 30329-4251 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, 1993. 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. Lippincott, Williams & Wilkins, 2000. 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: www.acor.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. 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. 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 Fax: (501) 329-9489 Web: http://thehealthre source.com/ MEDcetera, Inc. Phone: (800) 748-6866 Email: pgeyer@netropolis.net Web: http://users.netropolis.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 The National Patient Air Transport Hot line (NPATH) Hot line: (800) 296-1217 World Wide Web: http://www.aircareall.org/ Corporate Angel Network Westchester County Airport One Loop Road White Plains, NY 10604 (914) 328-1313 World Wide Web: http://www.corpangelnetwork.org/ National Association of Hospital Hospitality Houses Phone: (800) 542-9730 Ronald McDonald Houses Phone: (773) 348-5322 This fact sheet was adapted from Cancer Clinical Trials: Experimental Treatments and How They Can Help You, by Robert Finn, © 2001 by Robert Finn, published by Patient-Centered Guides. For more information, call (800) 998-9938 or see www.patientcenters.com.