National Institutes of Health Biospecimens Interest Group
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Biospecimens Interest Group


Mission: Serve as an educational and tutorial vehicle for disseminating information, best practices, regulations, and ethical/legal information formulated and issued by various NIH offices, federal agencies and other leading biospecimens organizations.

 

Vision:

 

1.      To create a place where all stakeholders may exchange scientific data, ideas, and information concerning the creation and use of high quality biospecimens for research, assay validation, technology development and other appropriate uses.

 

2.      To promote and facilitate interaction between NIH intramural and extramural stakeholders who are interested in and involved with a variety of clinically-oriented, translational research projects using high quality biospecimens.

 

3.      To encourage leading stakeholders to address critical elements in study design and statistical analysis of data to facilitate the production of accurate, optimal, and clinically meaningful results (best outcome).

 

4.      To educate stakeholders about the potential barriers and obstacles that may obstruct the sharing and collaboration between stakeholders across different organizations and countries.  

 

5.      To increase the awareness for the necessity of high quality biospecimens and the harmonization, and when appropriate, standardized procedures (best practices, SOPs) for annotating, collecting, transporting, processing, storing, and sharing biospecimens to ensure optimal reproducibility of outcomes and the privacy of the patients (donors) through adherence to the ethical and legal requirements associated with the use of biospecimens.

 

6.      To provide the connectivity to various biorepositories and biospecimens around the world, especially those containing rare and difficult to get biospecimens.


 
Our interest group is sponsored by the NIH Office of Rare Diseases Research and the
NCI Office of Biorepositories and Biospecimens Research
Please join our listserv so we can inform you about the date, time and the place for future meetings, speakers, website and other activities --- https://list.nih.gov/cgi-bin/wa?SUBED1=biospecimens&A=1.

Feature of the month:

The next meeting of the Biospecimens Interest Group will be on September 16, 2009, @ 1:00PM in the Masur auditorium, Building 10 (NIH Clinical Center). There will be no live webcastWe will feature a joint presentation on Mystery Diagnosis, given by Dr. Steve Groft (Director of the ORDR/NIH) Dr. William Gahl (Director, ORDR-NHGRI/NIH intramural research program) and Dr. John I. Gallin, (Clinical center director and associate director for clinical research/NIH). A reminder and additional information will be sent in early September.  The direct link to the archive is http://videocast.nih.gov/ram/biospecimen052609.ram


New Items:  

* GINA Legislation Update , April 6, 2009  Information for Researchers and Health Care Professionals.  For links and information please check the News & Views folder.

* ISBER March 2009  Newsletter! see details in News & Views folder. 

* TwinBiobank, http://www.timesonline.co.uk/tol/news/uk/science/article6004963.ece -- A database of 300,000 pairs of twins that would be by far the largest in the world is being planned by British scientists to investigate the genetic and environmental origins of disease and behaviour.

* BRN symposium update agenda and presentations:
http://brnsymposium.com/meeting/brnsymposium/2009/agenda.asp.  For additional information from Helen Moore, please check the "relatated documents" folder.

* Guidance on the Genetic Information Nondiscrimination Act: Implications for Investigators and Institutional Review Boards [link to DHHS document]

* NCI Best Practices for Biospecimens Resources (2007):  [download 48-page document]
 
* The Critical Role of Biospecimens in Cancer Research, an interview with NCI OBBR Director Dr. Carolyn Compton (2008):  [download 12-minute interview]

* NIH Catalyst article, "Program Expanded for 2009 Biospecimen Symposium" (Jan-Feb 2009):  [download entire issue, refer to page14]

* "What's Wrong With Summer Stiers?," a New York Times Magazine article about the NIH Undiagnosed Diseases Program, organized by the National Human Genome Research Institute, the NIH Office of Rare Diseases (ORD) and the NIH Clinical Center (February 22, 2009). 

Key Resources:

*
NCI Office of Biorepositories and Biospecimens Research
NIH Office of Rare Diseases Research


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For information about this interest group, please contact:
Yaffa Rubinstein (ORDR) at                  301-402-4338                 
Helen Moore (OBBR) at                        301-496-1550                 

If you experience problems with this website, e-mail nihsigs@mail.nih.gov and state the issue along with the name of the scientific interest group.


 
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