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Date: Monday, August 5, 1996 FOR IMMEDIATE RELEASE Contact: NCI Press Office(301)496-6641, Elly Kirschner, NABCO(212) 889-0606
The National Cancer Institute (NCI) has launched a broad initiative in partnership with patient advocate groups to make information on clinical trials available to patients and the public on the World Wide Web. The information will be in the form of easy-to-read summaries of the approximately 1,500 ongoing trials listed in PDQ, the NCI's online cancer information database.
Designed to help patients make informed decisions about treatment, this effort comes at a time when patient groups and clinical researchers are increasingly concerned that some managed care organizations are not covering clinical trials as a treatment option. "This effort is an innovative and important step forward in assuring public access to information supporting the needs of cancer patients," said NCI Director Richard D. Klausner, M.D.
The first phase of the initiative will be a pilot breast cancer project conducted jointly with the National Alliance of Breast Cancer Organizations (NABCO) -- a leading gateway.html central information resource and a network of more than 375 member organizations. Brief descriptive summaries of PDQ-listed breast cancer trials will be available in lay language on NABCO's home page (www.nabco.org). These user-friendly descriptions will serve as a prototype for the kind of clinical trial information to be developed with other patient information and advocacy groups and to be available on the Web.
"Increasing accrual to clinical trials is a crucial way to make more rapid progress against breast cancer," said Amy Langer, NABCO's executive director. "An increasing number of breast cancer patients and high-risk women are using the Web. By marketing PDQ and other trial information through our site, we hope to make clinical trials an automatic option to be considered by each woman, her family, and her medical team."
In the next phase of the initiative, NCI will work with patient advocate groups for other cancers and has already begun plans to pilot clinical trial summaries for brain tumors and prostate cancer as next steps in this program.
In the Trial News section of NABCO's home page, users will be able to find a current list and brief summaries (see sample) of ongoing breast cancer clinical trials -- organized in risk assessment, treatment, and quality-of-life categories -- along with the telephone number of a contact. If users want more information about a specific trial, they can click on the link in the NABCO description and be instantly connected to NCI's new clinical trials page (cancernet.nci.nih.gov/trials) to get a more detailed description. They will be able to print or download the information for review with family, friends, and health professionals.
A demonstration version of the PDQ-enhanced Trial News section of NABCO's home page is currently available at www.nabco.org. The complete listing of more than 150 PDQ breast cancer clinical trial summaries along with search capability will be available by October, which is National Breast Cancer Awareness Month.
NCI's PDQ database represents the most comprehensive source of information on cancer clinical trials in the world. NCI staff actively solicits information on clinical trials for PDQ from NCI- and NIH-funded sources, the pharmaceutical industry, and selected non-U.S. groups.
PDQ has a wide array of information about cancer written for patients, but the current clinical trials summaries are in technical language and are intended primarily for physicians and other health professionals. NCI's new initiative will ensure that essential information on ongoing trials is easily available in understandable language to those without technical medical knowledge and that it ultimately will be available through the Web sites of a wide range of cancer information organizations.
The new NCI clinical trials Web site is an integral part of CancerNet, accessible through the home page of NCI's International Cancer Information Center (cancernet.nci.nih.gov).
Attachment: Sample Clinical Trial Summary
In addition to learning about studies via the World Wide Web, patients and health professionals can learn about clinical trials by contacting NCI's Cancer Information Service (CIS). The CIS provides a nationwide telephone service for cancer patients and their families, the public, and health care professionals. The toll-free number is 1-800-4-CANCER (1-800-422-6237); services are provided in English and Spanish. People with TTY equipment may call 1-800-332-8615.
This document is available through the NCI's CancerNet services on the Web (cancernet.nci.nih.gov) and through Cancer Fax (dial 301-402-5874 from the handset on your fax machine).
The following summary description of a breast cancer clinical trial is an example of what will be found on NABCO's home page. This easy-to-understand description may be the first introduction to a clinical trial that an individual will have. The underlined words will be linked to an on-line glossary of terms that defines them. If interested in learning more about a specific trial, the user can click to be linked on-line to a more detailed protocol description in PDQ.
Adjuvant Hormonal Therapy in Node-Positive, Receptor-Positive Breast Cancer
This phase III trial studies the addition of fenretinide to tamoxifen as an adjuvant treatment for women whose breast cancer on initial diagnosis tests estrogen-receptor and/or progesterone-receptor positive, and who have involved axillary lymph nodes -- a diagnosis of stage II or stage III breast cancer. Trial participants must be postmenopausal, and begin the study within 12 weeks of their initial surgery for breast cancer. Patients will be randomized to one of two groups: those taking tamoxifen plus fenretinide, or those taking tamoxifen plus a placebo, by mouth once a day for five years. In addition to meeting the requirements described, eligible patients are those with no previous breast cancer treatment other than surgery and have no other serious medical problems or problems with vision.
PDQ ID #s: E-EB193; INT-0151.
For more information, call the protocol chairpersons at: Dr. Melody Cobleigh at 312-942-3240; Dr. Mark Graham at 919-966-4431; Dr. James Ingle at 507-284-2511. For a more detailed trial description, and a list of the physicians participating in this trial, link to the PDQ summary for health professionals.