NIH grants $10.5 Million for Genome Explorations -The Burrill Report

NIH grants $10.5 Million for Genome Explorations -The Burrill Report:

The National Human Genome Research Institute, part of the National Institutes of Health, is awarding $10.5 million in ten grants to help researchers identify millions of genomic elements that play a role in determining what genes are expressed and at what levels in different cells. The multi-year grants are part of the Encyclopedia of DNA Elements project, or ENCODE, set up to provide scientists with a comprehensive catalog of functional genomic elements. The project's goal is to help explain the role that the genome plays in health and disease.

DNA donor rights affirmed : Nature News & Comment

DNA donor rights affirmed : Nature

NIH committee urges that genome study subjects be told of medically relevant results.

"It is a familiar scenario in genetic research: a subject's DNA is collected for one study, deposited in a database or biobank and then analysed by other researchers for separate studies. But what happens when a later study stumbles on something that could be of significance for the donor, such as an allele for familial hypercholesterolaemia — a treatable genetic disorder that causes progressive atherosclerosis — or some other health-related variation? Do researchers conducting secondary studies and biobanks have a duty to share such revelations with the original research subjects?

They do, when possible, according to a detailed consensus statement from a working group funded by the US National Institutes of Health (NIH) in Bethesda, Maryland, and published this week (S. M. Wolf et al. Gen. Med. http://dx.doi.org/10.1038/gim.2012.23; 2012). The statement's 26 signatories consulted dozens of other researchers and biobank managers over a two-year period. They conclude that biobanks “shoulder significant responsibility” for addressing how to deal with 'incidental findings' — those research results that could have medical consequences for the donors of genetic material.

Genetic testing is increasingly

coming up with 'incidental

findings'.

Genetics researchers are divided on the matter of incidental findings......"

NIH launches consumer-friendly tips series on complementary health practices, March 6, 2012 News Release - National Institutes of Health (NIH)

Tuesday, March 6, 2012

NCCAM Press Office

NIH launches consumer-friendly tips series on complementary health practices

A new series of monthly health tips, Time to Talk Tips, will provide consumers with easy-to-read information on complementary health practices. The effort is managed by the National Center for Complementary and Alternative Medicine (NCCAM) at the National Institutes of Health.A resource in NCCAM's Time to Talk campaign, the series highlights specific health topics, such as the safe use of dietary supplements, natural products used for the flu and colds, and mind and body approaches used to manage symptoms of a variety of conditions.
The series will include simple tips, such as: Taking vitamin C regularly does not reduce the likelihood of getting a cold but may improve some cold symptoms, and some dietary supplements may interact with medications (prescription or over-the-counter) or other dietary supplements.

“An increasing number of consumers and patients use the Internet to answer health questions, yet the information they find can be overwhelming and is not always relevant or credible,” said Josephine P. Briggs, M.D., director of NCCAM. “This series will give people evidence-based facts to help them make more informed health care decisions. Health care providers can also provide these tips to their patients who are interested in learning more about complementary health practices.”

The tips accompany topics found in the NCCAM Clinical Digest, a monthly e-newsletter for health care providers that addresses the state of science on complementary health practices for a variety of health conditions. These same topics will also be discussed in monthly Twitter chats (@NCCAM), allowing the public to interact with the center, ask questions, and receive answers in real time.

Nearly 40 percent of Americans use some form of complementary health practice, according to the 2007 National Health Interview Survey. Through its Time to Talk campaign, NCCAM encourages patients and providers to talk about the use of complementary health practices by offering tools and resources—such as wallet cards and tip sheets—that are available for free at nccam.nih.gov/timetotalk.
To learn more about NCCAM's Time to Talk Tips, visit http://nccam.nih.gov/timetotalk.

The mission of the National Center for Complementary and Alternative Medicine (NCCAM) is to define, through rigorous scientific investigation, the usefulness and safety of complementary and alternative medicine interventions and their roles in improving health and health care. For additional information, call NCCAM’s Clearinghouse toll free (in the U.S.) at 1-888-644-6226, or visit the NCCAM Web site at nccam.nih.gov.

About the National Institutes of Health (NIH): NIH, the nation's medical research agency, includes 27 Institutes and Centers and is a component of the U.S. Department of Health and Human Services. NIH is the primary federal agency conducting and supporting basic, clinical, and translational medical research, and is investigating the causes, treatments, and cures for both common and rare diseases. For more information about NIH and its programs, visit www.nih.gov.

Confused by genetic tests? NIH's new online tool may help, February 29, 2012 News Release - National Institutes of Health (NIH)

Confused by genetic tests? NIH’s new online tool may help

An online tool launched today by the National Institutes of Health will make it easier to navigate the rapidly changing landscape of genetic tests. The free resource, called the Genetic Testing Registry (GTR), is available at http://www.ncbi.nlm.nih.gov/gtr/

U.S. News & Events - National Institutes of Health (NIH)

NIH Highlights & Headlines

Weekly media tip sheet of health research, discoveries, and science

Dateline: Monday, February 27, 2012

Information below is designed for credentialed journalists and under embargo per the date on each item. Item dates are as accurate as possible as of today.

Coming this week:

Monday, 2/27 – Information about an NIH collaboration to examine the repurposing of known medications

Wednesday, 2/29 – A statement from the National Eye Institute on Rare Disease Day

Wednesday, 2/29 – NIH introduces database of genetic tests

Thursday, 3/1 – An update on the GuLF STUDY: over 10,000 participants enrolled

More news and events: www.nih.gov/news/

Finding a Clinical Trial - NIH Clinical Research Trials and You - National Institutes of Health (NIH) Around the Nation and Worldwide

Finding a Clinical Trial

Around the Nation and Worldwide

NIH conducts clinical research trials for many diseases and conditions, including cancer, eye diseases, and allergy and infectious diseases. To search for other diseases and conditions, you can visit ClinicalTrials.gov.

website: NIH Clinical Research Trials and You - National Institutes of Health (NIH)

• Home
• The Basics
• Volunteer Stories
• Researcher Stories
• Finding a Clinical Trial

• For Health Care Providers

• Educational Resources
• Glossary of Common Terms

press release: New website: NIH Clinical Research Trials and You, February 6, 2012 News Release - National Institutes of Health (NIH)

For Immediate Release
Monday, February 6, 2012

Contact:
NIH Office of Communications
301-496-5787

New website: NIH Clinical Research Trials and You

Agency-wide resource provides important information for the public and health care providers

The National Institutes of Health has created a new website, NIH Clinical Research Trials and You to help people learn more about clinical trials, why they matter, and how to participate. From the first cure of a solid tumor with chemotherapy to the use of nitroglycerin in response to heart attacks, clinical research trials — or research studies involving people — have played a vital role in improving health and quality of life for people around the globe.
Clinical trials are essential for identifying and understanding ways to prevent, diagnose, and treat disease. Research has shown that among the greatest challenges to recruitment of volunteers is the lack of general knowledge about what trials involve, where they are carried out, and who may participate.
"The ability to recruit the necessary number of volunteers is vital to carrying out clinical research that leads to health and medical advances," said NIH Director Francis S. Collins, M.D., Ph.D. "This new, centralized resource will make it much easier for the public and health professionals to learn about clinical trials and how people can participate in them."
Visitors to the website will find information about:

• The basics of clinical trial participation
• First hand experiences from actual clinical trial volunteers
• Explanations from researchers
• Links on how to search for a trial or enroll in a research matching program

In addition, health care professionals can read about evidence-based strategies for talking with patients about trials, print audience-tested posters to help promote trials in clinics and offices, and find other educational materials.
NIH supports clinical research trials across the country and throughout the world. NIH’s ongoing effort to raise awareness about clinical research and educate potential clinical trial participants about the option of a clinical trial is vital to developing public support and understanding for how clinical research drives medical discovery and improves health outcomes.

About the National Institutes of Health (NIH): NIH, the nation's medical research agency, includes 27 Institutes and Centers and is a component of the U.S. Department of Health and Human Services. NIH is the primary federal agency conducting and supporting basic, clinical, and translational medical research, and is investigating the causes, treatments, and cures for both common and rare diseases. For more information about NIH and its programs, visit www.nih.gov.

open access: Journal of Translational Medicine - Supporting the advancement of science: Open access publishing and the role of mandates (the Research Works Act[1])

The complete article is available as a provisional PDF. The fully formatted PDF and HTML versions are in production.

excerpt pdf file:

"In December 2011 the United States House of Representatives introduced a new bill, the Research Works Act (H.R.3699), which if passed could threaten the public’s access to US government funded
research. In a digital age when professional and lay parties alike look more and more to the online environment to keep up to date with developments in their fields, does this bill serve the best
interests of the community? Those in support of the Research Works Act argue that government open access mandates undermine peer-review and take intellectual property from publishers without compensation, however journals like Journal of Translational Medicine show that this is not the case. Journal of Translational Medicine in affiliation with the Society for Immunotherapy of Cancer demonstrates how private and public organisations can work together for the advancement
of science.

Editorial

Journal of Tra nslational Medicine is an open access journal published by BioMed Central that aims to optimise communication between basic and clinical science. Now in its 10th year of publication
the journal is successful in its aim for fostering communication from bench to bedside.
A new bill, the Research Works Act[1], has been introduced in the United States House of Representatives threatening the public’s access to US government funded research and the foundation on which Journal of Translational Medicine was built.

The bill states:

“No Federal agency may adopt, implement, maintain, continue, or otherwise engage in any policy, program, or other activity that:
(1) causes, permits, or authorizes network dissemination of any private-sector research work without the prior consent of the publisher of such work; or (2) requires that any actual or prospective author, or the employer of such an actual or prospective author, assent to network dissemination of a private-sector research work.”

If passed, this bill would force the retraction of the public access policy of the National Institutes of Health[2], who mandate that recipients of their grants must make their published research publically accessible by depositing full-text versions in open access repositories (such as PubMed Central), and prevent similar policies from being introduced by federal agencies in the future.

It is argued [3, 4] that research funded by tax-payers should be made available to the public free of charge so that the tax-payer does not in effect pay twice for the research - first for the research to be done and then to read the results. As much as this may be true, the biggest detriment seems to be to developments in science. Open access to research means the widest possible dissemination of information. Limiting access to a (by comparison) small subset of people with subscriptions can stunt further developments......"

Office of Dietary Supplements (ODS) - NIH

Research Bought, Then Paid For - NYTimes.com

"THROUGH the National Institutes of Health, American taxpayers have long supported research directed at understanding and treating human disease. Since 2009, the results of that research have been available free of charge on the National Library of Medicine’s Web site, allowing the public (patients and physicians, students and teachers) to read about the discoveries their tax dollars paid for."

"But a bill introduced in the House of Representatives last month threatens to cripple this site. The Research Works Act would forbid the N.I.H. to require, as it now does, that its grantees provide copies of the papers they publish in peer-reviewed journals to the library. If the bill passes, to read the results of federally funded research, most Americans would have to buy access to individual articles at a cost of $15 or $30 apiece. In other words, taxpayers who already paid for the research would have to pay again to read the results...." 

Bill Blocking NIH Public Access Policy Draws Fire - ScienceInsider

"A little-noticed proposal in Congress to block a federal policy requiring free access to biomedical research papers went big time today, adding fuel to a long-running debate in the blogosphere...."

NIH launches first online genetics course for social and behavioral scientists, January 3, 2012 News Release - National Institutes of Health (NIH)

NIH launches first online genetics course for social and behavioral scientists

A new genetics educational program will provide social and behavioral scientists with sufficient genetics background to allow them to engage effectively in interdisciplinary research with genetics researchers. The Office of Behavioral and Social Sciences Research (OBSSR) at the National Institutes of Health, partnered with the National Coalition for Health Professional Education in Genetics to create the free, Web-based project...........

Dresser appointed to NIH (U.S.) advisory committee | Newsroom | Washington University in St. Louis

"...Dresser, an expert in biomedical ethics, holds a joint appointment at the law school and at Washington University School of Medicine in St. Louis, teaching law and medical students about legal and ethical issues in end-of-life care, biomedical research, genetics, assisted reproduction and related topics......She has written extensively in her field and is the co-author of a casebook on bioethics and law and a book on the ethical treatment of animals. She also is the author of a book on patient advocacy and research ethics......Dresser also is a prolific speaker and panelist at national and international symposia, conferences and workshops on such topics as bioethics and cancer; advance treatment directives; stem cell research; biomedical research policy; and human cloning."

NIH summit to focus on management of radiation dose in computerized tomography, Tuesday, February 1, 2011 News Release - National Institutes of Health (NIH)

Reporters and Editors are Invited to Apply for 2011 "Medicine in the Media" Course, January 6, 2011 News Release - National Institutes of Health (NIH)

Apply online: http://medmediacourse.nih.gov
Deadline: February 28, 2011

NCI announces plans to reinvigorate clinical trials, December 23, 2010 News Release - National Institutes of Health (NIH)

Note: see second post for list of groups (international) 

 

 "Consolidation of cooperative group program is designed to bring enhanced efficiencies to oncological sciencesThe National Cancer Institute (NCI) has announced major changes to be made in the long-established Clinical Trials Cooperative Group Program ....."

 http://www.cancer.gov/cancertopics/factsheet/NCI/clinical-trials-cooperative-group ...... For more information about cancer, please visit the NCI Web site at http://www.cancer.gov or call NCI's Cancer Information Service at 1-800-4-CANCER (1-800-422-6237)....."

NIH Office of Rare Diseases Research (ORDR) - Undiagnosed Diseases Program

NIH Office of Rare Diseases Research (ORDR) - Undiagnosed Diseases Program

NIH expands network focused on how genes affect drug responses, September 7, News Release - National Institutes of Health (NIH)

"...Spearheaded by the NIH's National Institute of General Medical Sciences (NIGMS) and launched in 2000, the PGRN has already identified gene variants linked to responses to medicines for different cancers, heart disease, asthma, nicotine addiction and other conditions...."cont'd

NIH: Program to Enhance Communication of Life-sustaining Treatment Preferences Associated with Closer Adherence to a Person’s Wishes when Compared wit