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NIH Public Liaison News Bulletin - March 2001
May 1, 2001, COPR Meeting Announcement The fifth meeting of the NIH Director's Council of Public Representatives (COPR) will be held on Tuesday, May 1st, 2001, in Building 31, Conference Room 6 on the National Institutes of Health (NIH) campus. Among the topics proposed for discussion are research involving children, human research protections, and nursing and diabetes research. You may access information about the COPR and the COPR meetings online at http://copr.nih.gov or inquire by e-mail at gormanj@od.nih.gov.
Fall 2000 COPR Meeting Summary The fourth meeting of the NIH Director's Council of Public Representatives (COPR) was held October 31 and November 1 at the NIH in Bethesda, MD. Dr. Ruth Kirschstein, Acting Director of NIH, described recent activities in which COPR members had participated, including the Advisory Council to the Director (ACD) panel review on gene transfer and clinical research and the annual Government Performance and Results Act (GPRA) review of NIH. Presenters at this meeting included Dr. Barry Kramer, Director of the NIH Office of Medical Applications of Research; Ms. Mary McCabe, Director of NCI's Office of Education and Special Initiatives; Dr. Tom Murray, a member of the National Bioethics Advisory Commission; and Dr. Greg Koski, Director of the HHS Office of Human Research Protections. Discussion items included human research protection issues such as patient protection measures and informed consent strategies, an NIH health disparities research initiative, and a review of NIH information materials that COPR members can use when discussing NIH with various communities. For more information on the COPR's meetings and activities, visit http://copr.nih.gov. COPR Member Activities and Highlights
COPR Member Plans to Work with NIH on Web Site Accessibility Issues Now that she's back on U.S. territory, Pam Fernandes will be working with NIH information technology (IT) staff to assist them in reviewing the NIH home page, as well as other aspects of the NIH Web site, for compliance with the new section 508 guidelines. The goal of these guidelines and NIH's effort is to extend access to IT resources and tools to people with disabilities. Pam will be helping the NIH IT staff by providing critical input and feedback on many of these accessibility issues for blind or visually impaired persons. COPR Member Speaks at National Eye Institute Council Meeting Maurice Rabb, M.D., was invited to speak at the National Eye Institute's Advisory Council Meeting this February. Dr. Rabb gave a detailed slide presentation describing the history and mission of the NIH Director's Council of Public Representatives (COPR) and provided examples of the many different types of NIH activities in which COPR members have been involved. Ms. Anne Thomas, Associate Director of the NIH Office of Communications and Public Liaison, said that Dr. Rabb's presentation was described by many as "extremely interesting and very well done." COPR Member Serves on Office of Medical Applications Research Discussion Group Melanie Dreher, Ph.D., R.N., has been invited to be the COPR Representative for the Office of Medical Applications of Research (OMAR) Discussion Group, which meets three times per year. The group's first meeting was held on January 19, 2001. The Discussion Group includes representatives both from outside the federal government and from health-related federal agencies. The group members provide their opinions and perspectives about OMAR activities, such as Consensus Conference processes and evaluations. The group has recently discussed OMAR's development of a core curriculum for medical reporters and health journalists. This curriculum would focus on how the media weighs and reports medical evidence for reporting medical, science, and health information to the public. COPR Member Invited to OHRP's National Advisory Committee Meeting On the basis of her hard work with the COPR Working Group on Human Research Protections (HRP), COPR member Debra Lappin, Esq., was invited to attend the Office of Human Research Protections National Advisory Committee meeting on December 20-21, 2000. Discussion items included human research protections, children in research, and financial relationships in human research, and they provided Ms. Lappin with useful information to take back to the COPR HRP working group. COPR Member Attends NIAMS Patient Representatives Group On December 9, Bob Roehr attended the meeting of the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) Patient Representatives Group. He expressed an interest in attending future meetings and in helping to publicize a new Community Health Center (CHC) that the Institute is establishing. The group viewed and discussed draft floor plans for the CHC as well as logo ideas for the Health Partnership Program, of which the center will be a part. The NIAMS Patient Representatives Group enables the Institute to get feedback on its programs from patients enrolled in clinical research studies and from individuals interested in these programs. For more information, contact Connie Raab (NIAMS) at (301) 496-8190 or by e-mail at RaabC@mail.nih.gov. COPR Member Facilitates NIH Workshop at East Tennessee State University On October 19, 2000, Joan Lancaster facilitated an NIH workshop on Policies, Procedures, and Funding Opportunities at East Tennessee State University. Several universities in the area jointly sponsored this workshop. The workshop included formal presentations by NIH staff in the morning and breakout sessions with various Institute representatives in the afternoon. Participants had the opportunity to discuss Institute/Center- and program-specific issues with NIH staff during the breakout sessions. Dr. Yvonne Maddox, NIH Acting Deputy Director, also attended the event and was featured as a keynote speaker on health disparities during one of the events. COPR Member Speaks at NIDCR Committee Meeting Vicki Kalabokes was invited to speak to a 13-member Coordinating Panel about the mission of COPR and the activities in which COPR has been involved to date. The Coordinating Panel is part of the National Oral Health Information Clearinghouse, a service of the National Institute of Dental and Craniofacial Research (NIDCR) at NIH. Established in 1994, the clearinghouse targets the information needs of special care patients—those with medical or disabling conditions that compromise oral health—and the health care providers who serve them. COPR Member Wins Gold Medal in Sydney, Australia at the 2000 Paralympics Pam Fernandes is back from Sydney, Australia, and is still glowing from her extremely successful Paralympic experience. Pam and her cycling partner, Al Whaley, won the gold medal for mixed tandem cycling and two silver medals in other tandem events, and they set a new record for the mixed tandem sprint 200 meter flying time trial. Overall, Pam and Al set a world record and two Paralympic records, all while Pam suffered from a broken foot. The NIH staff would like to join COPR in extending heartfelt congratulations to Pam and Al. COPR Member Attends Meeting on Genetic Research On September 25-26, 2000, Melanie Dreher, Ph.D., R.N., attended the First Community Consultation on the Responsible Collection and Use of Samples for Genetic Research meeting. This meeting was co-sponsored by the National Institute of General Medical Sciences (NIGMS), several other NIH Institutes, Centers,and Offices, the National Science Foundation, and the Department of Energy. The meeting addressed concerns that gathering information about identified populations, or individual members of those populations, could lead to discrimination, stereotyping, stigmatization, and other social harms in the United States. Approximately 60 participants from a broad range of ethnic, racial, and other identified groups came together to discuss the best approaches to protect persons who participate in genetic research. COPR Members Attend Financial Conflicts of Interest Conference Bob Roehr and Isaac Montoya, Ph.D., attended the Financial Conflicts of Interest conference held on August 15-16, 2000, at the NIH in Bethesda, MD. The Department of Health and Human Services has identified financial conflicts of interest in research as one of the five main issues to be addressed in developing initiatives to strengthen protections for human subjects in clinical research. COPR Member Serves on NLM PubMed Central Advisory Committee Dr. Maurice Rabb is currently serving on the National Library of Medicine's PubMed Central National Advisory Committee. PubMed Central is a Web-based publishing technology that helps NIH to widely disseminate its research results to the public and to the scientific community. This service will archive, organize, and distribute peer-reviewed reports from journals in the life sciences, as well as reports that have been screened but not formally peer-reviewed. The Advisory Committee advises the Director, NIH, the Director, NLM, and the Director, NCBI, concerning the content and operation of the PubMed Central repository. COPR Associate Helps Test Usability of the NIGMS Web Site In the fall of 2000, COPR Associate Robert Zimbelman assisted the University of Maryland in conducting usability tests of the National Institute of General Medical Sciences (NIGMS) Web site. The results of these tests will help guide NIGMS in the redesign and reorganization of this site.
NIH Public Liaison Meetings, Events, and Programs NCI Announces New Program for Consumer Advocates The National Cancer Institute (NCI) is now accepting applications for membership in the Consumer Advocates in Research and Related Activities (CARRA) program. This program is designed to increase the involvement of persons affected by cancer in NCI activities. CARRA members will provide ideas and viewpoints directly to NCI staff and therefore supply critical links between NCI and the advocacy community. Thus, CARRA will help NCI to incorporate the cancer survivor's viewpoint in advancing its mission to conduct and support cancer research, training, health information dissemination, and other programs. CARRA will match consumer advocate skills and interests with NCI activity needs. Once accepted into CARRA, an advocate may help develop and review cancer education pamphlets, videos, or Web sites; participate in meetings about NCI research plans and policies; or evaluate patient-oriented studies at cancer research centers. CARRA will select 150 consumer advocates who will serve three-year terms at NCI. To be eligible, members must be a cancer survivor or a family member or life partner, or have three or more years of involvement in cancer-related activities, such as support groups or hotline workers. Each person selected for CARRA will participate in formal activities, either from home or at the NCI campus in Bethesda, MD, at least three times during their term. NCI will also ask CARRA members to regularly provide their community's viewpoints on issues important to NCI. CARRA members will receive a general orientation as well as additional training tailored for each activity in which they participate. For more information, send and e-mail to liaison@od.nci.nih.gov or contact Tracy Clagett at (301) 594-3194. NIDCD Meeting With American Indian Groups The National Institute on Deafness and Other Communication Disorders (NIDCD), in collaboration with the Indian Health Service (IHS), sponsored a meeting to discuss American Indian Health Education Opportunities on February 15, 2001, in Bethesda, MD. Invited participants included persons with programmatic responsibilities related to American Indian education, such as representatives of the IHS, the Administration for Children and Families, the Bureau of Indian Affairs/Department of Interior, and the Department of Education. The purpose of the meeting was to discuss potential collaborations between NIDCD and these agencies for disseminating health information on several topics, including otitis media, noise-induced hearing loss, age and hearing loss, and early identification of hearing loss. For more information, contact Marin P. Allen, Ph.D., at (301) 496-7243 or by e-mail at marin_allen@nih.gov. NCCAM Town Meeting The National Center for Complementary and Alternative Medicine (NCCAM) sponsored its second in a series of town meetings on complementary and alternative medicine research on March 6 at the Westward Look Resort in Tucson, Arizona. The University of Arizona's Steele Memorial Children's Research Center, a pediatric specialty center funded by NCCAM, co-sponsored the event. National and local medical experts spoke on current developments in complementary and alternative medicine (CAM) research at the local, regional, and national levels, and NCCAM Director Stephen E. Straus, M.D., provided an overview of NCCAM's mission, research, and accomplishments. Three CAM experts discussed therapies for women's health and for medical conditions such as arthritis and asthma. Participants had the opportunity to ask experts questions during two designated question-and-answer periods, and a press conference was held immediately after the meeting. The event was free and specifically geared to the public. For more information, contact Anita Greene (NCCAM) at (301) 496-1712 or Kate Jensen (SMCRC) at (520) 626-7217. NIAAA Created Exhibit for Brain Awareness Week National Institute on Alcohol Abuse and Alcoholism (NIAAA) has prepared a new multisensory exhibit to demonstrate how acute and chronic alcohol exposure affects brain cell functioning. The exhibit will be displayed March 14-15 at the National Museum of Health and Medicine, where more than four hundred seventh-grade students from the Washington area are expected to attend Brain Awareness Week activities. Dr. Enoch Gordis, NIAAA Director, will launch the two-day program with a keynote address on alcohol abuse and alcoholism. On Thursday, March 15, Dr. Dennis Twombly will present the NIAAA exhibit "The Drunken Brain," using a four-foot brain model constructed from chicken wire and Christmas lights. Students will be involved in simulated experiments where they can attempt to navigate an obstacle course while wearing Fatal Vision prism goggles and dribble a basketball with and without prism goggles. The objective is to have students observe firsthand the diminished motor performance experienced during alcohol intoxication. In addition to the model brain display, the exhibit will provide resource material prepared by NIAAA on alcohol abuse. For more information, contact Dennis A. Twombly, Ph.D., at (301) 443-9334 or by e-mail at dtwombly@mail.nih.gov, or contact Diane Miller at (301) 443-3861 or by e-mail at dmiller1@mail.nih.gov. V I S I O N: A Traveling Exhibit Continues The National Eye Institute's (NEI's) V I S I O N exhibit, which highlights how the eye and brain work together to create vision and how researchers are developing novel strategies to protect our eyesight from diseases and disorders, continues its tour. More than four million people have visited the exhibit since it began its tour in 1993. The recent tour schedule incluides the following cities:
NIMH Public Forum on Major Illnesses and Co-Occurring
Depression Patients living with cancer, diabetes, heart disease, stroke, AIDS, Parkinson's disease, and other major diseases may also be fighting another illness: depression. Research has shown that treatment for co-occurring depression can often advance health outcomes for many of these patients, including better adherence to treatment regimens and improved quality of life. In addition, ongoing studies are tracing the biological aspects of depression that could affect other illnesses at the physiological, cellular, and genetic levels. At a public forum in Pittsburgh, PA, the National Institute of Mental Health (NIMH) will share scientific findings on depression and its treatment, including treatment approaches tailored to the needs of people with co-existing illnesses. Following the plenary sessions, breakout groups will contribute to action plans for developing necessary NIMH research, creating helpful educational and communication materials, and next steps for working together. Attendees will include patients, providers, policymakers, business leaders, and researchers. The Pittsburgh forum is one of a series of meetings that NIMH is sponsoring nationwide to seek input from the American public about research needs and opportunities. For more information about this forum contact Jane Jacobs at (301) 435-4673, or visit http://www.nimh.nih.gov/events/pittsburgh.cfm. NIH Consensus Conference on Dental Caries The NIH Office of Medical Applications of Research and the National Institute of Dental and Craniofacial Research (NIDCR) will sponsor a Consensus Development Conference on Diagnosis and Management of Dental Caries Throughout Life at the Natcher Conference Center on the NIH campus in Bethesda, MD. The conference will examine the current state of dental caries research to help health care providers and the general public make informed decisions about this important public health issue. During the first two days of the conference, experts will present the latest findings to an independent, non-federal consensus development panel. After weighing all of the scientific evidence, the panel will draft a statement addressing issues such as the best methods for detecting, preventing, and treating dental caries. The meeting concludes with a press conference. This event is free and open to the public. For more information, contact John Bowersox (OMAR) at (301) 496-4819. Additional information, including registration materials, is available on the Internet at http://consensus.nih.gov/. THE EYE SITE: A Traveling Exhibit on Low Vision
for Shopping Centers NEI will launch the EYE SITE: A Traveling Exhibit on Low Vision for Shopping Centers nationwide tour in Los Angeles in April. The tour will continue through August, and the exhibit will be displayed in five malls throughout the Los Angeles area. A host committee of several vision-related groups and organizations will sponsor the exhibit tour, which offers Los Angeles numerous public information programs for low-vision patients, their families, and their friends. The exhibit includes five kiosks, with an interactive multimedia touch screen program; panels that describe causes of low vision, warning signs, and local resources; and a self-assessment. One of the kiosks features a display of devices to help people with low vision. This exhibit contains many bilingual English-Spanish elements. For more information on the EYE SITE, contact Jean Harrigan at (301) 496-5248 or visit the Web site at http://www.nei.nih.gov/nehep/eyesite/. NIAAA Promotes National Alcohol Screening Day The third annual National Alcohol Screening Day (NASD) will be held on Thursday, April 5, during Alcohol Awareness Month. NASD, a national outreach program, is designed to educate people about alcohol use disorders, screen them for a range of problems, and refer those in need to treatment resources. NASD is the result of a collaboration between the nonprofit organization Screening for Mental Health, Inc., NIAAA, the Center for Substance Abuse Treatment, and the Center for Substance Abuse Prevention. Last year an estimated 52,000 persons attended NASD screening events at over 1,100 community-based and college screening sites nationwide. More than 20 organizations are sponsoring this year's NASD. Recruitment letters for NASD 2001 have been sent to health-related organizations and associations, community health care facilities, colleges and universities, Indian Health Care facilities, safety net hospitals, and primary care providers. For more information, visit the NIAAA Web site at www.niaaa.nih.gov, contact Anne Keliher (SMH) at (781) 239-0071 or by e-mail at akeliher@nmisp.org, or contact Diane Miller (NIAAA) at (301) 443-3861 or by e-mail at dmiller1@mail.nih.gov. NIH to Hold Meeting on Pharmacogenetics NIH announces the first of a series of scientific meetings for the recently established Pharmacogenetics Research Network and Knowledge. The meeting will be held April 25, 2001, in the Lister Hill Auditorium on the NIH campus in Bethesda, MD. Research presentations will be featured, along with panel discussions on both ethical issues and interactions with industry. For more information please go to the NIGMS Web site: http://www.nigms.nih.gov/pharmacogenetics.html. NIGMS funds the Pharmacogenetics Research Network with several other NIH Institutes, including the National Heart, Lung, and Blood Institute, the National Cancer Institute, the National Human Genome Research Institute, the National Library of Medicine, and the National Institute of Environmental Health Sciences. For more information, contact Ann Dieffenbach at (301) 496-7301. NIDCR Holds Patient Advocates Forum The National Institute of Dental and Craniofacial Research (NIDCR) will host its second annual Patient Advocates Forum at the St. James Hotel in Washington, DC. A planning committee of forum participants is currently working with Institute staff to develop the agenda for the day-long program. Prominent in the discussions will be the Surgeon General's Report on Oral Health in America, released in May 2000, and its implications for advocacy organizations. For more information, contact Patricia Sheridan at (301) 594-7557 or by e-mail at Patricia.Sheridan@nih.gov.
NIH Public Liaison Announcements - Spring 2001 Walking a Good Path 2001 Calendar American Indian experts and organizations nationwide collaborated with the National Institute on Drug Abuse (NIDA) to raise awareness about the health risks of drug abuse and addiction, as well as prevention and treatment. This collaboration yielded an intergenerational year 2001 calendar, "Walking A Good Path." To order free copies of the calendar contact Sheryl Massaro at (301) 443-6245. NIDA Toolbox Provides Information About Drug Treatment
Strategies Nearly 12,000 drug treatment programs around the country will benefit from years of drug abuse and addiction research thanks to the NIDA Clinical Toolbox: Science-Based Materials for Drug Abuse Counselors. The toolbox, packaged in a bright gray box with a large "TX" on the front, is large enough to store all current NIDA drug treatment publications as well as material that will arise from future NIDA-sponsored research. For more information, contact Jan Lipkin at (301) 443-6245. NIAAA Announces Special Supplement of Addiction
Journal In February 2001, an announcement about the Addiction supplement was disseminated to NIAAA's approximately 450 liaison groups to increase awareness about this resource for persons, organizations, and researchers interested in investigating alcohol-related questions as well as other areas of behavioral health. This special supplement of the international journal Addiction, titled "State-of-the-Art Methodologies in Alcohol-Related Health Services Research," was released as a direct outgrowth of the April 1999 conference of a similar title, which was sponsored by NIAAA. To receive a copy of the special supplement, contact Octavia Weatherspoon at (301) 443-0786 or by e-mail at oweather@willco.niaaa.nih.gov. HIV Vaccine Communications Steering Group Meeting
in New York The HIV Vaccine Communications Steering Group of the National Institute of Allergy and Infectious Diseases (NIAID) met in New York to discuss the scope of work required to fulfill their HIV Vaccine Communications Plan. The Steering Group promoted HIV vaccine awareness and education and helped to create a supportive environment for future HIV vaccine studies. The membership represented persons from diverse communities and included recognized leaders in communications, the media, social marketing, community education, health care, HIV advocacy, public policy, and HIV prevention. Members were invited to participate because of their commitment to HIV vaccine development and their knowledge of national and international perspectives and of communications challenges associated with HIV vaccine research. The Steering Group will also meet with HIV Vaccine Trials Network Community Educators and Community Advisory Board members to discuss principles of collaboration as they work toward similar goals in different communities. For more information, contact James Hadley at (301) 496-5717. New National Public Service Campaign Highlights
How Drugs Damage the Brain NIDA has a new message for America's youth: "Keep Your Brain Healthy. Don't Use Drugs." In September 2000, NIDA launched a new, nationwide public service campaign, which features radio and television public service announcements (PSAs) in both English and Spanish, to help America's youth understand the risks associated with drug use. NIDA's partners in this campaign include Dr. Drew Pinsky, co-host of Loveline and drDrew.com; retired Major General Arthur T. Dean, CEO of Community Anti-Drug Coalitions of America (CADCA); and Sue Rusche, Executive Director of National Families in Action. For more information about "Keep Your Brain Healthy," contact Jan Lipkin at (301) 443-6245. NIDA launched Spanish PSAs at the Sixth Annual Latino Behavioral Health Institute Conference in Los Angeles, CA. The PSAs are targeted to parents and adolescents and feature cutting-edge brain scans showing the effects of drug abuse and addiction on the human brain. In addition, NIDA announced the availability of a variety of new and recently translated NIDA research brochures. For more information about the Spanish campaign, contact Sheryl Massaro at (301) 443-6245. NINDS Launches Stroke Public Awareness Campaign To raise awareness of stroke symptoms and treatments, the National Institute of Neurological Disorders and Stroke (NINDS) is launching a multifaceted public awareness campaign called, "Know Stroke: Know the Signs. Act in Time." The campaign aims to increase the number of people who recognize stroke symptoms and act quickly to seek treatment. In the future, the campaign will feature public service announcements on thousands of radio stations nationwide and a comprehensive community education kit that includes an eight-minute consumer video, a facilitator's guide, a promotional flyer, and a poster from the campaign. For more information, contact the NINDS Office of Communications and Public Liaison at (301) 496-5751. Research Updates on Prescription Drugs NIDA and its partners will sponsor a press conference to present research updates on "Prescription Drugs: Misuse, Abuse, and Addiction." The nonmedical use or abuse of prescription drugs remains a serious public health concern, and NIDA will release a new research report to answer questions about the consequences of abusing commonly prescribed medications. A scientific meeting will take place in the afternoon. To register for the scientific meeting, contact Nancy Butler, Conference Coordinator, at (301) 468-6008, extension 432. NDEP Launches New Comprehensive Care Initiative The National Diabetes Education Program (NDEP), sponsored by NIDDK, will hold a Steering Committee Meeting in Washington, DC. NDEP will announce the launch of a new comprehensive care initiative to raise awareness and promote the initiative among health care providers and people with diabetes. The campaign will initially be targeted to health care providers and the medical media, then announced to the general media at the annual meeting of the American Diabetes Association in Philadelphia, PA, in June 2001. For more information, contact Joanne Gallivan, Director of NDEP, at (301) 496-3583.
NIH Public Liaison Announcements - Fall 2000 NIAAA Project Invites Researchers to Visit Alcoholism
Treatment Clinics Enoch Gordis, M.D., National Institute on Alcohol Abuse and Alcoholism (NIAAA) Director, held his final meeting on the New York "Researcher in Residence" project. The "Researcher in Residence" program, a joint activity that encourages the adoption of research-based improvements in treating alcoholism, invites research scientists to make brief visits to alcoholism treatment clinics. The scientists provide technical assistance on specific, research-based improvements to help clinic directors identify organizational changes necessary to incorporate improvements into their routine treatment regimens. A final report on the New York project is being printed. For more information, contact Dr. Michael Hilton at (301) 443-8753 or by e-mail at mhilton@niaaa.nih.gov. NIAAA Meets With Schools of Social Work NIAAA held a meeting that brought together faculty from schools of social work throughout the United States to develop a model curriculum and faculty training course in prevention and treatment of alcohol-use disorders for social workers. This group will write 12 modules that will provide research-based knowledge on alcohol to master of social work programs and graduate social workers worldwide. The Council of Social Work Education and the National Association of Social Workers will co-publish the curriculum. For more information, contact Peggy Murray, M.S.W., at pmurray@niaaa.nih.gov or Isabel Ellis, M.S.W., at iellis@mail.nih.gov. NIAAA Director Speaks to 5,000 Community Representatives On December 6, Enoch Gordis, M.D., addressed 5,000 community representatives at the 2000 National Leadership Forum XI convened by the Community Anti-Drug Coalitions of America in Washington, DC. Dr. Gordis' presentation on alcohol research findings was videocast to additional locations throughout the country. NIAAA also sponsored workshops on worksite alcohol prevention and expanding the reach and effectiveness of alcohol screening during the three-day event. For more information, contact Kelly Green Kahn at (301) 443-0347 or by e-mail at kgreenka@mail.nih.gov. NICHD Sponsors First Longitudinal Cohort Study
Meeting Members of the advocacy community, congressional staff, and the public were invited to be among the 400 participants in the first major planning meeting for the Longitudinal Cohort Study of Environmental Effects on Child Health and Development. The meeting was sponsored by the National Institute of Child Health and Human Development (NICHD), the Centers for Disease Control and Prevention, and the Environmental Protection Agency. Small discussion groups sought input on all aspects of the study, including obtaining community input, communication with stakeholders, recruitment issues, and educating the public on this critical study. The study will be designed and pilot-tested over the next few years prior to a full-scale launch. Summary materials from this meeting are now available on the study's Web site at http://nationalchildrensstudy.gov. For more information, contact Lisa Kaeser at (301) 496-0536. NIH Holds Consensus Conference on Adjuvant Therapy
for Breast Cancer The NIH Office of Medical Applications of Research and the National Cancer Institute sponsored a Consensus Development Conference on Adjuvant Therapy for Breast Cancer. The conference brought together national and international experts to clarify—for clinicians, patients, and the general public—key questions regarding the selection of treatments, quality of life, and new research directions in adjuvant therapy and treatments used in addition to surgery to kill cancer cells that may have begun to spread to other organs. An independent, non-federal consensus development panel recommended treatment with a combination of chemotherapy drugs for most women with localized breast cancer. The panel also recommended hormonal therapy for women whose tumors have estrogen receptors, and radiation therapy for women who have had mastectomies and who are at high risk for cancer recurrence. The panel's complete statement is available on the Internet at http://consensus.nih.gov/. For more information, contact John Bowersox (OMAR) at (301) 496-4819. NINDS Targets African American Community for Stroke
Awareness Campaign The Surgeon General of the United States was the featured speaker at a health education event, "Stroke Sunday," which was co-sponsored with the American Stroke Association, a division of the American Heart Association. The event addressed the importance of stroke awareness among the African American community. The National Stroke Association formed a partnership with the National Institute of Neurological Disorders and Stroke (NINDS) to display "Know Stroke" dioramas in selected airports and on billboards in cities with a high prevalence of stroke. For more information, contact the NINDS Office of Communications and Public Liaison at (301) 496-5751. NIGMS Hosts Workshops on Genetic Research with
Native American Tribes and with Hispanic and African American Communities
The First Community Consultation on the Responsible Collection and Use of Samples for Genetic Research was held in Bethesda, MD, and in followup, the National Institute of General Medical Sciences and the National Human Genome Research Institute co-funded a small workshop, which was organized by Native American tribes, in February of this year. These workshops focused on the need to eliminate racial classifications in NIH research, educate the public about genetic research, involve communities in all phases of a study from the beginning, and develop respectful ways of interacting between researchers and communities. The official meeting report is posted on the Web at http://www.nigms.nih.gov/news/reports/community_consultation.html. Plans are also under way for national meetings to hear the views of the Hispanic and African American communities regarding genetic research. For more information, contact Ann Dieffenbach at (301) 496-7301. NIAMS Health Partnership Program: Community Collaboration
The National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) Intramural Research Program (IRP) launched the Health Partnership Program (HPP), a diversity outreach initiative to reduce health disparities in diseases of the joints, muscles, bones, and skin among minority communities. Since the fall of 1999, NIAMS has been designing a model community-based program that will first address health issues related to arthritis and other rheumatic diseases in African Americans and Hispanics/Latinos in the metropolitan Washington, DC, area. The Institute has formed partnerships with leaders and representatives of these communities, and continues to work with them to implement the program. A current focus is the opening the NIAMS Community Health Center in Washington, DC, where community members will have access to clinical studies, scientifically based health information, classes on nutrition and disease management, and medical care by a rheumatologist. For more information about the HPP and the Community Health Center, view the IRPartners newsletter, a newly developed publication for participants of the NIAMS clinical programs, at http://www.niams.nih.gov and at http://www.niams.nih.gov.
News from the NIH Offices of Public Liaison Results Released from Teen Alcohol
and Drug Use Survey The Department of Health and Human Services released the results of the 26th annual Monitoring the Future Survey at a press conference. The 2000 study surveyed over 45,000 students in 435 schools across the nation. Monitoring the Future, which is conducted by the University of Michigan's Institute for Social Research and funded by the National Institute on Drug Abuse (NIDA), asks 8th, 10th, and 12th graders about lifetime use, past year use, past month use, and daily use of drugs, alcohol, cigarettes, and smokeless tobacco. For more information, contact Michelle Muth at (301) 443-6245. NIDCD Briefs Council Members on Public Liaison
Activities The National Institute on Deafness and Other Communication Disorders' (NIDCD) Office of Health Communication and Public Liaison (OHCPL) held an ad hoc meeting with NIDCD Advisory Council members on January 25 as part of the Institute's ongoing effort to ensure that Council members are aware of and involved with public liaison activities. In addition to a presentation by Dr. Marin Allen, OHCPL Chief, on the responsibilities, current activities, and future directions of the Office, Council members were given information packets on health topics within the Institute's mission areas. The ad hoc group also discussed strategies for increased outreach to the public. For more information, contact Marin P. Allen, Ph.D., at (301) 496-7243 or by e-mail at marin_allen@nih.gov. Update on NIDCD National Campaign to Prevent Noise-Induced
Hearing Loss NIDCD, in partnership with the National Institute of Occupational Safety and Health and the National Institute of Environmental Health Sciences, established a coalition of national, regional, and local organizations, voluntary groups, unions and industry groups, organizations that advocate for children and older Americans, and state and local government agencies to implement the "WISE EARS!" national health education campaign to prevent noise-induced hearing loss (NIHL). Since the implementation of this campaign, several new developments have occurred. The coalition has grown to more than 80 organizations, and NIDCD has developed a Web site, http://www.nidcd.nih.gov/health/wise/index.htm, which features sections specially designed to disseminate science-based information about NIHL to kids, teachers, parents, the public, and the media. A new bimonthly newsletter has been created to keep coalition members informed about ongoing activities, and new materials have been developed for distribution at exhibits and meetings. For more information, contact Marin P. Allen, Ph.D., at (301) 496-7243 or by e-mail at marin_allen@nih.gov. Juvenile Diabetes Research Foundation Visits NIH The National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) coordinated a visit from representatives of the Juvenile Diabetes Research Foundation (JDRF). JDRF staff and volunteers received a tour of NIH through the Visitor's Center and met with Dr. Allen Spiegel, NIDDK Director, and other NIDDK scientists to discuss research in diabetes. Community Educators Partnering with NIAID-funded
Research Networks National Institute of Allergy and Infectious Diseases (NIAID) staff who work with HIV/AIDS community constituent groups and community educators or coordinators from several of NIAID's clinical research networks met to share ideas about outreach, education, and training. They discussed strategies and opportunities for disseminating information to and sharing resources among different Community Advisory Boards (CAB) within a given region, as well as the feasibility of holding joint CAB meetings when multiple NIAID-funded CABs exist in a given city. IOM Immunization Safety Review Meeting on Autism
and MMR Vaccines Slated The Centers for Disease Control and Prevention and
NIH have asked the Institute of Medicine to establish an independent committee
to review the hypotheses about existing and emerging immunization safety
concerns. The next meeting will address MMR (measles, mumps, rubella)
vaccines and autism. This meeting took place at the National Academy of
Sciences in Washington, DC. For more information on the meeting, visit
the Web site at http://www4.nas.edu/webcr.nsf/(MeetByDocID)/ United States Postal Service Issue of Diabetes
Stamp NIDDK and its National Diabetes Education Program, along with other diabetes organizations, will participate in the announcement of the U.S. Postal Service's new diabetes stamp at the Joslin Clinic in Boston, MA. The stamp will be issued to raise awareness about diabetes and its complications. NIDDK's Participation in National Hispanic Medical
Association's Conference NIDDK's Office of Minority Health Research Coordination will participate in the annual National Hispanic Medical Association (NHMA) meeting in Washington, DC. Hispanic physicians, medical students, and policymakers will attend this meeting to share information about enhancing academic programs, community-based programs, medical practices, and health policies that target Hispanics. The Office of Minority Health Research Coordination will supply an exhibit with patient education materials, many of which are written in Spanish. For more information, contact Betsy Singer at (301) 496-3583. Diabesity Meeting Dr. Allen Spiegel, National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) Director, will speak at Shape-Up America's Diabesity Meeting in Alexandria, VA. The meeting will bring together general practitioners and internists, nurses, and health educators to discuss the relationship between and the issues surrounding diabetes and obesity. Dr. Spiegel will speak in the morning on "Diabetes and Obesity: What Are Our Priorities and What Are the Challenges?" For more information, contact Betsy Singer at (301) 496-3583. NIAAA Reaches Out to Business and Economic Scholars
The National Institute on Alcohol Abuse and Alcoholism (NIAAA) is actively reaching out to business and economic scholars at national business schools to engage them in health services research. NIAAA hopes to increase this community's awareness about NIH and areas of potential collaboration. "Although few business scholars have participated in our programs in the past, one of my current goals is to get more health economists involved," says Harold Perl, chief of the NIAAA Health Services Research Branch. For more information, contact Dr. Harold Perl at (301) 443-0788, by fax at (301) 443-8774, or by e-mail at hperl@willco.niaaa.nih.gov. For information about various program opportunities, go to the NIAAA Web sites:
NIDA Co-Sponsors the Fifth Annual Prism Awards NIDA, the Entertainment Industries Council, and the Robert Wood Johnson Foundation will sponsor the Fifth Annual PRISM Awards in Los Angeles, CA. These awards are bestowed yearly to members of the entertainment community who have accurately depicted drug, alcohol, and tobacco abuse and addiction in their productions. For more information, contact Beverly Jackson at (301) 443-6245. National Diabetes Education Program Campaign Launch
to Medicare Patients NDEP will launch "The Power to Control Diabetes Is in Your Hands" campaign targeting Medicare beneficiaries who have diabetes. This campaign, in partnership with the Health Care Financing Administration, will educate seniors about the importance of regular blood glucose testing and the availability of Medicare benefits that cover diabetes monitoring equipment and supplies. Campaign products include a poster, print ads, countertop display, health care provider resource guide, media kit, community promotions kit, and an easy-to-read patient education brochure, which is available in English, Spanish, and six Asian/Pacific Islander languages. The campaign will be promoted through the media, with special emphasis on the 28 media markets with high representation of Medicare beneficiaries. In addition, the materials also will be used to form partnerships with national, state, and local organizations; implement a point-of-purchase program for pharmacists and retail pharmacies; and implement community-based campaigns in three pilot sites: Puerto Rico, San Diego, and the state of Nevada. For more information, contact Betsy Singer at (301) 496-3583. NIH Consensus Panel Recommends Approach to Lifelong
Care for PKU An independent consensus panel sponsored primarily by the NIH Office of Medical Applications of Research and the National Institute of Child Health and Human Development (NICHD) concluded that people with the rare metabolic disorder phenylketonuria (PKU) should adhere to the special diet central to their treatment. This conclusion should put to rest the long-standing debate about whether people with PKU could abandon the diet after early childhood. Efforts are being made to publicize these findings among practitioners and families nationwide. Children born with PKU can be vulnerable to mental retardation, congenital heart disease, and other health problems. The panel's members included national and international experts who presented the latest research findings. A teenager with PKU also contributed to and fully participated in the decision-making process. Call 1-888-644-2667 or visit the NIH Consensus Development Program Web site at http://consensus.nih.gov for the full NIH Consensus Statement on PKU. National Drug Abuse Treatment Clinical Trials
Network Expands NIDA expanded its National Drug Abuse Treatment Clinical Trials Network to include an additional five regional research centers: the Southeastern node, at the Medical University of South Carolina, Charleston, SC; the Florida node, at the University of Miami, Coral Gables, FL; the Great Lakes regional node, at Wayne State University, Detroit, MI; the Ohio Valley node, at the University of Cincinnati, Cincinnati, OH; and the Rocky Mountain node, at the University of Colorado Health Sciences Center, Denver, CO. This expands the network total to almost 70 community-based treatment programs. The five newly funded centers will receive a total of $11 million over five years. The total finding for all of the Clinical Trials Network now includes 11 components funded by a total of $121 million over five years. For more information, contact Michelle Muth at (301) 443-6245. NIAID's Introduction to Biomedical Research Encourages
Minority Students The National Institute of Allergy and Infectious Diseases (NIAID) introduced 60 students from the United States, Puerto Rico, Guam, and the Virgin Islands to NIH. The program acquaints academically talented minority students with science career opportunities and summer job information. Students attended lectures by NIH scientists, had one-on-one interviews with NIH scientists and staff, and toured research laboratories. The program is part of a key component of both the NIH and NIAID Strategic Plans on Health Disparities, which aims to increase the number of minority scientists. Of the 188 students who participated in the first eight classes, 117 have earned medical degrees, 17 have received doctoral degrees, 5 have applied to NIH for individual investigator awards, and 40 have applied for NIH training and fellowship grants. For more information, contact James Hadley at (301) 496-5717. Scientists Introduce Middle School Students to
Research World In an event that furthered NIAID's goal to reach schools with minority populations and underrepresented groups, seven scientists from the NIAID's Rocky Mountain Laboratories (RML) in Hamilton, MT, recently brought their world of scientific research and laboratory experiments to 30 gifted and talented students at Ronan Middle School. Ronan is located on the Confederated Salish-Kootenai Tribal Reservation, in a school district that has a large Native American population. The Biomedical Research After School Scholars (BRASS) program, designed by RML technical and scientific staff, communicates the nature of scientific research and stimulates interest in science careers for students who have demonstrated an interest in science. BRASS runs for five weeks and consists of lab sessions covering topics such as blood, genetics, cancer, AIDS, infectious diseases, and animal research. For more information, contact James Hadley at (301) 496-5717. NHLBI Teams with American Heart Association
The National Heart, Lung, and Blood Institute (NHLBI) and several federal agencies have signed a Memorandum of Understanding (MOU) with the American Heart Association (AHA) to fight heart disease and stroke. AHA President Rose Marie Robertson, M.D., called the agreement a "milestone in public and private sector cooperation." The federal agencies and AHA will work together on population- and community-based public education and health promotion programs; activities to bring about policy, systemic, and environmental improvements in cardiovascular health care delivery systems; research; media-based public awareness campaigns about the warning signs and symptoms of heart attack and stroke; promotion of professional education and training, including co-hosting of national conferences and dissemination of "best practices" among the cardiovascular community; and other activities. A press release is available online at http://www.nhlbi.nih.gov/new/press/01-02-01.htm.
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