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Symptoms and Manifestations - Meeting Covers Fatigue in Rheumatic Disease and Other Disorders
When: September 8–10, 2004
Where: Airlie Conference Center, Warrenton, VA
Institute: National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS)A working group recently met to discuss the knowledge and treatment of fatigue in rheumatic illnesses. The meeting, entitled The Role of Fatigue in Rheumatic Diseases identified knowledge gaps associated with the study and treatment of fatigue in rheumatic illnesses such as lupus, fibromyalgia and associated disorders, rheumatoid arthritis, and osteoarthritis. The group compared these knowledge gaps to the study and treatment of fatigue in other disorders, such as cancer, cardiovascular conditions, HIV/AIDS, and multiple sclerosis. The medical school of the University of Medicine and Dentistry of New Jersey (UMDNJ) coordinated the meeting.
Although attendance was limited to a small group of invited researchers and clinicians, NIAMS and UMDNJ also value input from patient advocacy and support groups. To enable outside group participation, meeting coordinators are producing DVDs of all the sessions. Next Steps
To order your free DVD, e-mail Gudrun Lange, Ph.D., at lange@njneuromed.org, or mail your request to:
Dr. Gudrun Lange
DVA NJ Health Care System
385 Tremont Avenue (Mail Stop 129)
East Orange, NJ 07018
After viewing the DVD, you may post comments and suggestions until September 30, 2004, at feedback@njneuromed.org. Feedback is encouraged and will enhance the final summary paper.
Alcohol / Alcohol Abuse / Alcoholism - College Drinking Prevention Web Site Wins Award
When: September 1, 2004
Where: Nationwide
Institute: National Institute on Alcohol Abuse and Alcoholism (NIAAA)The NIAAA College Website, www.collegedrinkingprevention.gov, won a bronze award from the WWW Health Awards, in the category of Health Promotion/Disease and Injury Prevention Information. Sponsored by the Health Information Resource Center, a national clearinghouse for consumer health information programs and materials, the WWW Health Awards provide a "seal of quality" to the best health-related Web sites for consumers and professionals. Sites are judged on accuracy, success in reaching targeted audiences, and overall quality.
This award adds to the total of more than a dozen Web honors the site has won since NIAAA launched it in 2002. Next Steps
To see the site, visit www.collegedrinkingprevention.gov.
Cancers - People With Recurrent Cancer Sought to Discuss Education Materials
Institute: National Cancer Institute (NCI)NCI is looking for people with recurrent cancer who are interested in discussing new education materials related to their illnesses. NCI needs participants to assess the draft material in light of their personal experiences. Health professionals or other people employed in a health care setting are not eligible.
People who are interested should call NCI staff, who will ask a few questions and add participants' names, with their permission, to NCI's database. NCI will contact qualified participants at a later date to schedule interviews. All people invited to an interview, which takes no more than an hour, will be paid for their time.
Next Steps
If interested, call toll-free (888) 249-0029. - Cancer Patients May Review Complementary Alternative Medicine Brochure
Institute: National Center for Complementary and Alternative Medicine (NCCAM), National Cancer Institute (NCI)NCI and NCCAM are looking for people who are interested in reading and commenting on a new brochure about complementary and alternative medicine (CAM). The institutes want to learn what patients or prior patients, based on personal experience, believe is important to include in the brochure.
To qualify, participants must be currently receiving standard cancer treatment (such as chemotherapy, radiation therapy, or surgery), or have received standard cancer treatment within the last 12 months. Use of CAM is not required to participate. CAM can include acupuncture, biofeedback, chiropractic care, dietary supplements, energy healing, herbal medicine, homeopathic treatment, hypnosis, imagery, massage therapy, mind-body therapies (such as yoga or Tai Chi), relaxation therapy, or spiritual healing.
Health professionals are not eligible to comment. All participants will be paid for their time, which will total one to two hours.Next Steps
If interested, please call toll-free (888) 249-0029. Callers will be asked a few questions about themselves in their choice of English or Spanish and, if selected, will be contacted at a later date. Community Outreach - RELEASE OF RESEARCH STRATEGY TO FIGHT OBESITY EPIDEMIC
When: August 2004
Where: Nationwide
Institute: National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK)The U.S. Department of Health and Human Services has targeted obesity as a major national priority, prompting the development of a new Strategic Plan for NIH Obesity Research. This plan targets the development of new research in areas of greatest scientific opportunity and coordinates all obesity research across NIH. It places special emphasis on the serious problems emerging in overweight and obese children. The final report incorporates public input fro a wide variety of individuals and organizations. More Next Steps
The report is available at http://obesityresearch.nih.gov. Free single copies are available (no bulk orders) by contacting the Weight-control Information Network at (202) 828-1025, toll-free (877) 946-4627, or by e-mailing win@info.niddk.nih.gov. - Group Urges More Public Input and Transparency in Priority-Setting Process
Institute: Office of the Director (OD)NIH can take steps to become more transparent and to gain more public input into decisions on which research targets to pursue, the so-called research priority-setting process, according to a recent report. In April 2004, the NIH Director’s Council of Public Representatives (COPR) presented this report, containing 11 recommendations on topics such as outreach to communities and partnerships with outside groups, communication with research and patient communities, and public education on the priority-setting process.
“The NIH has a duty to educate members of the public about its mission and operations and a duty to involve the public in the research priority-setting process,” said NIH Director Elias A. Zerhouni, M.D.
The COPR assessed how the NIH includes members of the public in its work, highlighted effective strategies, and recommended that the NIH expand on these best practices. The report analysis revealed many ways in which the NIH effectively advises, educates, and seeks input from the public. The COPR focused on how the public is heard in the process used by the NIH to determine which research projects to fund. The COPR believes that public input into the research priority-setting process is important, because decisions to fund specific research initiatives over others has direct implications for the public’s health. Next Steps
The Report, Enhancing Public Input and Transparency in the National Institutes of Health Research Priority Setting Process, is available online at http://copr.nih.gov/reports/enhancing.pdf. The COPR's Web site is at
http://copr.nih.gov. Additional information on public participation at the NIH is available at http://getinvolved.nih.gov.
Complementary and Alternative Medicine - Cancer Patients May Review Complementary Alternative Medicine Brochure
Institute: National Center for Complementary and Alternative Medicine (NCCAM), National Cancer Institute (NCI)NCI and NCCAM are looking for people who are interested in reading and commenting on a new brochure about complementary and alternative medicine (CAM). The institutes want to learn what patients or prior patients, based on personal experience, believe is important to include in the brochure.
To qualify, participants must be currently receiving standard cancer treatment (such as chemotherapy, radiation therapy, or surgery), or have received standard cancer treatment within the last 12 months. Use of CAM is not required to participate. CAM can include acupuncture, biofeedback, chiropractic care, dietary supplements, energy healing, herbal medicine, homeopathic treatment, hypnosis, imagery, massage therapy, mind-body therapies (such as yoga or Tai Chi), relaxation therapy, or spiritual healing.
Health professionals are not eligible to comment. All participants will be paid for their time, which will total one to two hours.Next Steps
If interested, please call toll-free (888) 249-0029. Callers will be asked a few questions about themselves in their choice of English or Spanish and, if selected, will be contacted at a later date. Hearing Loss Prevention - Sertoma Safe Ears! Project to Help Prevent Hearing Loss
Where: Nationwide
Institute: National Institute on Deafness and Other Communication Disorders (NIDCD)There is a new project to help prevent hearing loss, Sertoma Safe Ears! The project involves giving kits—containing educational materials, on hearing loss prevention, a set of disposable hearing protection, and a media package—to members of Sertoma's 650 clubs. Sertoma is a non-profit organization that assists people with speech, hearing, and language disorders, and sponsors community projects. During its 84th convention in July, Sertoma International shared information about the NIDCD's WISE EARS! program with attendees and also introduced Sertoma Safe Ears! in collaboration with WISE EARS!
Distribution sites will include retail outlets, such as home improvement centers, that sell equipment with the potential to damage hearing. The first-year goal is to reach more than 100,000 homes in 250 communities. More Next Steps
For more information on Sertoma Safe Ears!, visit Sertoma's Web site at www.sertoma.org.
HIV/AIDS - HIV Information Supplied at Washington, DC, Black Family Reunion Celebration
When: September 11–12, 2004
Where: Washington National Mall, Washington, DC
Institute: National Institute of Allergy and Infectious Diseases (NIAID)Information on HIV vaccines and research was available to participants in the Black Family Reunion Celebration, a two-day cultural event recognized as the largest, most significant family event in the nation, attracting more than 500,000 people each year. The festival celebrates the enduring strengths and traditional values of the African-American family. Two NIAID groups, the HIV Vaccine Communications Campaign and the Vaccine Research Center, distributed information at the NIH-sponsored pavilion. The event was free and open to the public. More Next Steps
For more information, contact Matthew Murguía at (301) 435-7164 or visit www.ncnw.org/blackfamily.htm. - HIV Vaccine Issues Discussed at United States Conference on AIDS
When: October 21–24, 2004
Where: Marriott Hotel, Philadelphia, PA
Institute: National Institute of Allergy and Infectious Diseases (NIAID)Participants at the largest national AIDS workers' conference, the United States Conference on AIDS (USCA), will be able to hear about the latest developments in HIV vaccine research and the importance of clinical trial participation. Speaking on those subjects will be NIAID representatives, who will network with more than 4,000 dedicated case managers, physicians, public health workers, advocates, policy makers, and other leaders in the field.
NIAID’s HIV Vaccine Communications Campaign will participate in a special full-day session sponsored by NIH. Representatives will discuss preventive HIV vaccine research and the importance of incorporating this research into larger HIV prevention strategies. In addition, members of NIAID-funded community advisory boards and constituency groups are organizing a morning session on the importance of clinical trial participation, particularly for underrepresented populations. The conference's main sponsor is the National Minority AIDS Council (NMAC), a national organization dedicated to developing leadership within communities of color to address the challenges of HIV/AIDS. More Next Steps
For information, contact Matthew Murguía at (301) 435-7164 or visit the conference Web site at http://www.nmac.org/conferences/usca2004. Registration fees range from $375–$550. - 2004 Historically Black College and University HIV/AIDS Summit
When: October 6–7, 2004
Where: Benedict College, Columbia, SC
Institute: National Institute of Allergy and Infectious Diseases (NIAID)Reports of HIV infection outbreaks among students at Historically Black Colleges and Universities (HBCU) highlight the need for a more forceful HIV prevention message to students and university administrators. Recognizing the essential role of national African-American leadership, particularly on HBCU campuses, in spreading the message, the NIAID HIV Vaccine Communications Campaign plans to talk to about 1,500 HBCU students and administrators at the 2004 Historically Black College and University HIV/AIDS Summit. NIAID staff will speak about the status of HIV/AIDS vaccine research and development, and highlight the critical role that HBCUs play in the research process.
The Summit is not open to the public. Conference committee representatives are inviting only selected students from the eight South Carolina HBCUs. The invitees are already involved in community activities on their respective campuses. More Next Steps
For more information, contact Matthew Murguía at (301) 435-7164. - Overcoming Health Disparities: Global Experiences from Partnerships
When: October 6–10, 2004
Where: Sheraton Atlanta Hotel, Atlanta, GA
Institute: National Institute of Allergy and Infectious Diseases (NIAID)An international conference on overcoming health disparities across the globe will bring together health leaders from more than 23 countries. Entitled Overcoming Health Disparities: Global Experiences from Partnerships Between Communities, Health Services and Health Professional Schools, the conference will include more than 700 U.S. health leaders from academic, clinical, and community settings. Community-Campus Partnerships for Health and The Network: Towards Unity for Health are co-sponsoring this event. More Next Steps
Registration is required and will be accepted until the end of September. Fees are $200 for students and more for others, depending on status. For more information, contact Matthew Murguía at (301) 435-7164, or visit www.the-networktufh.org/conference.
Immune System - Meeting Covers Fatigue in Rheumatic Disease and Other Disorders
When: September 8–10, 2004
Where: Airlie Conference Center, Warrenton, VA
Institute: National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS)A working group recently met to discuss the knowledge and treatment of fatigue in rheumatic illnesses. The meeting, entitled The Role of Fatigue in Rheumatic Diseases identified knowledge gaps associated with the study and treatment of fatigue in rheumatic illnesses such as lupus, fibromyalgia and associated disorders, rheumatoid arthritis, and osteoarthritis. The group compared these knowledge gaps to the study and treatment of fatigue in other disorders, such as cancer, cardiovascular conditions, HIV/AIDS, and multiple sclerosis. The medical school of the University of Medicine and Dentistry of New Jersey (UMDNJ) coordinated the meeting.
Although attendance was limited to a small group of invited researchers and clinicians, NIAMS and UMDNJ also value input from patient advocacy and support groups. To enable outside group participation, meeting coordinators are producing DVDs of all the sessions. Next Steps
To order your free DVD, e-mail Gudrun Lange, Ph.D., at lange@njneuromed.org, or mail your request to:
Dr. Gudrun Lange
DVA NJ Health Care System
385 Tremont Avenue (Mail Stop 129)
East Orange, NJ 07018
After viewing the DVD, you may post comments and suggestions until September 30, 2004, at feedback@njneuromed.org. Feedback is encouraged and will enhance the final summary paper.
Minority Outreach - HIV Information Supplied at Washington, DC, Black Family Reunion Celebration
When: September 11–12, 2004
Where: Washington National Mall, Washington, DC
Institute: National Institute of Allergy and Infectious Diseases (NIAID)Information on HIV vaccines and research was available to participants in the Black Family Reunion Celebration, a two-day cultural event recognized as the largest, most significant family event in the nation, attracting more than 500,000 people each year. The festival celebrates the enduring strengths and traditional values of the African-American family. Two NIAID groups, the HIV Vaccine Communications Campaign and the Vaccine Research Center, distributed information at the NIH-sponsored pavilion. The event was free and open to the public. More Next Steps
For more information, contact Matthew Murguía at (301) 435-7164 or visit www.ncnw.org/blackfamily.htm. - 2004 Historically Black College and University HIV/AIDS Summit
When: October 6–7, 2004
Where: Benedict College, Columbia, SC
Institute: National Institute of Allergy and Infectious Diseases (NIAID)Reports of HIV infection outbreaks among students at Historically Black Colleges and Universities (HBCU) highlight the need for a more forceful HIV prevention message to students and university administrators. Recognizing the essential role of national African-American leadership, particularly on HBCU campuses, in spreading the message, the NIAID HIV Vaccine Communications Campaign plans to talk to about 1,500 HBCU students and administrators at the 2004 Historically Black College and University HIV/AIDS Summit. NIAID staff will speak about the status of HIV/AIDS vaccine research and development, and highlight the critical role that HBCUs play in the research process.
The Summit is not open to the public. Conference committee representatives are inviting only selected students from the eight South Carolina HBCUs. The invitees are already involved in community activities on their respective campuses. More Next Steps
For more information, contact Matthew Murguía at (301) 435-7164. - Overcoming Health Disparities: Global Experiences from Partnerships
When: October 6–10, 2004
Where: Sheraton Atlanta Hotel, Atlanta, GA
Institute: National Institute of Allergy and Infectious Diseases (NIAID)An international conference on overcoming health disparities across the globe will bring together health leaders from more than 23 countries. Entitled Overcoming Health Disparities: Global Experiences from Partnerships Between Communities, Health Services and Health Professional Schools, the conference will include more than 700 U.S. health leaders from academic, clinical, and community settings. Community-Campus Partnerships for Health and The Network: Towards Unity for Health are co-sponsoring this event. More Next Steps
Registration is required and will be accepted until the end of September. Fees are $200 for students and more for others, depending on status. For more information, contact Matthew Murguía at (301) 435-7164, or visit www.the-networktufh.org/conference.
Obesity - RELEASE OF RESEARCH STRATEGY TO FIGHT OBESITY EPIDEMIC
When: August 2004
Where: Nationwide
Institute: National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK)The U.S. Department of Health and Human Services has targeted obesity as a major national priority, prompting the development of a new Strategic Plan for NIH Obesity Research. This plan targets the development of new research in areas of greatest scientific opportunity and coordinates all obesity research across NIH. It places special emphasis on the serious problems emerging in overweight and obese children. The final report incorporates public input fro a wide variety of individuals and organizations. More Next Steps
The report is available at http://obesityresearch.nih.gov. Free single copies are available (no bulk orders) by contacting the Weight-control Information Network at (202) 828-1025, toll-free (877) 946-4627, or by e-mailing win@info.niddk.nih.gov.
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