Advocacy groups' databases could spur research

New genetic databases created by powerful advocacy groups could be a boon to research on cancer and other rare diseases. They also could help people with known genetic mutation to find clinical trials.

The goal is to press for collaboration on treatments and to reduce costs and risks that might dissuade pharmaceutical companies from investing in potential new therapies, The Wall Street Journal reports.

An iHealthBeat article outlines three plans:

  • A three-year, $8.2 million project from the Leukemia & Lymphoma Society that ultimately will contain data on 900 patients with acute myeloid leukemia. The project will combine the resources of the Oregon Health Sciences University, gene-sequencing company Illumina and Intel Corp.
  • The Multiple Myeloma Research Foundation is expected to reveal next week the first results from an ongoing $40 million, 1,000-patient study mapping the genetic and clinical characteristics of the blood cancer.
  • The Michael J. Fox Foundation will enroll 600 patients in a study on two recently discovered genetic mutations and how they affect the progression of Parkinson's disease. 

The European Union announced early this year that it will invest 38 million Euros (more than $50 million) on genetic research on rare diseases. England also plans an extensive cancer database tracking all 350,000 new tumors detected each year.

The low incidence of these diseases makes global collaboration essential. More than 70 major research and healthcare organizations from 41 countries this summer formed an alliance to develop a framework addressing the technical, logistical, and ethical issues for effectively sharing genomic data.

To learn more:
- find the Journal article
- find the iHealthBeat piece

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