/On The Road with the LRG: NCATS Presentation

On The Road with the LRG: NCATS Presentation

By |2018-10-30T11:13:09+00:00February 10th, 2016|Newsletter, Patient Registry|

NIH NCATSOn Tuesday, January 12, a small delegation of LRG staff journeyed to Washington, DC, to make a presentation to the executive leadership of the National Center for Advancing Translational Science (NCATS). The team from LRG included Deputy Executive Director Marisa Bolognese, Patient Registry Director Michelle Durborow, and Director of Strategic Alliances  Mildred Menos.

Located in Rockville, Maryland, NCATS was established in 2012 by the National Institutes of Health to transform the translational science process so that new treatments and cures for disease can be delivered to patients faster.  Translational science refers to the field of investigation that seeks to turn the observations and advancements found in the lab into practical policy, procedures and innovations that improve the daily lives and overall health of patients and the public.

Although NCATS does not focus on specific diseases, one of many goals that they and the LRG have in common is the importance of addressing the bottlenecks inherent in the current research and drug development space that are creating time-consuming delays and inefficiencies in the way data is shared.  This is an especially crucial issue for a rare cancer such as GIST, which has a small and scattered patient population globally and no advanced screening techniques to date.

The LRG team presented selections from its cutting-edge Patient Registry platform, Tissue Bank, Virtual Tumor Board, ongoing research and innovation projects and various other educational and programmatic services. The full house included notable names from leadership such as NCATS Executive Director Chris Austin and Deputy Director Pamela McInnes.  Also present were representatives from the Sarcoma Learning Collaborative, a research consortium headquartered at the University of Kansas devoted to discovering and developing new treatments for sarcomas affecting children, adolescents and adults, that the Life Raft Group has also been in dialogue with.

The LRG is proud to contribute to the power and impact collaboration can have on the rare disease landscape and looks forward to keeping you up to date on the outputs of these partnerships in the months ahead.

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