V.  Recommendations and Findings

Basic Research Priorities
Clinical/Epidemiology Research Priorities
Education/Outreach Priorities
Other Common Themes/Issues for Special Consideration

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In the final full session of the meeting, Dr. Sieber and Edward Trimble, M.D., Ph.D., Head of Surgery Section, Cancer Therapy Evaluation Program, Division of Cancer Treatment and Diagnosis, NCI, compiled the key points and recommendations presented by the co-chairs into a list of research priorities. They then opened the discussion to the full complement of attendees. Comments from the audience were added to the list of priorities, which were consolidated into three major topical areas: Clinical/Epidemiology Research (as summarized by Drs. Sieber and Trimble), Basic Research, and Education/Outreach. The consolidated research priorities identified were:

Basic Research Priorities

• Establish new and maintain existing tissue repositories.
• Identify biomarkers of susceptibility.
• Investigate and define DES-induced genetic effects and gene imprinting.
• Conduct studies that allow researchers to predict whether other compounds, such as drugs, pesticides, or other agents, might have DES-like adverse outcomes.

Clinical/Epidemiology Research Priorities

• Continue follow-up of established cohorts and expand existing, or establish new, cohorts to include more DES mothers, daughters, sons, and long-term cancer survivors. Follow-up should include psychosocial effects, which could serve as a model for other cancer patients or for patients with long-term illnesses.
• Improve and expand monitoring and tracking of DES sons.
• Study DES effects on other ("orphan") organ systems, including the immune system, cardiovascular system, breast, bone, brain/nervous system, and bowel/intestines.
• Study the effects of other hormones, such as OCs, HRT, fertility drugs, and other agents, alone or in combination, or as a cumulative effect over time, on DES daughters' health.
• Identify or develop clinical markers for cancer and infertility among DES-exposed women through analyses of infertility clinic cohorts and review of gynecologic cancer cases.
• Access cohorts of DES-exposed persons in other countries. Attendees cited The Netherlands as one possibility.
• Develop guidelines for the treatment of hormonally sensitive cancers in DES-exposed men and women.
• Continue to revise and update guidelines for DES daughters, as needed, and disseminate widely.
• Conduct an assessment of the DES experience in clinical trials and in cancer databases, such as SEER.
• Incorporate questions about DES use into cancer information databases, such as SEER, and clinical trials.

Education/Outreach Priorities

• Continue to coordinate efforts of researchers, consumers/advocates, and clinicians. Bring key players together on a regular basis.
• Promote maintenance of current and establishment of new partnerships that include advocacy groups, health care providers, and researchers from academia and government.
• Disseminate screening and treatment guidelines widely. Information dissemination to providers and the public is key to increasing awareness and improving treatment.

Other Common Themes/Issues for Special Consideration

Several additional points that ran through all four breakout sessions were again raised during the open forum. First, the question of DES-associated health effects in DES sons remains a concern. As discussed during the meeting, a few cohorts are tracking and monitoring this population. It also was noted, however, that many DES sons who have been contacted in the past expressed very clearly that they were not interested in participating in these cohorts or related studies. Second, participants agreed that national meetings similar to the current meeting and that in 1992 should be held more often, perhaps every 2 to 3 years. The 7-year span between these two meetings was considered too long. A third point involved insurance-related issues, such as the impact of the changing insurance climate on coverage and the screening, reimbursement, and management of DES-related health problems; attendees suggested that at future meetings, an ongoing dialog should address these issues. Future meetings could include insurance-focused presentations and/or breakout groups.