PCORI Allocates $142M To Expand Clinical Research Data Network

July 22, 2015 in News

On Tuesday, the Patient-Centered Outcomes Research Institute’s Board of Governors approved about $142.5 million in spending to further develop and expand its national clinical research data network, Healthcare Informatics reports (Raths, Healthcare Informatics, 7/21).

Background

PCORI is a not-for-profit organization created under the Affordable Care Act to fund comparative-effectiveness research.

In December 2013, PCORI approved an initial $93.5 million funding round to build the data network, called PCORnet. The initial funding went to:

  • 18 research networks focused on patients with specific health conditions who are interested in sharing health data; and
  • 11 clinical data research networks with health care systems collecting data during care delivery (iHealthBeat, 3/27).

Funding Details

According to Healthcare Informatics, the new funding will go toward the second phase of the network’s development, during which several research studies are set to begin. The second phase will last for three years.

In addition, the money will help PCORI add seven new data networks to PCORnet. The funding also will provide continued support to the 27 networks that were selected to take part in PCORI’s first phase of development, which began in April 2014 (Healthcare Informatics, 7/21).

The seven new networks joining PCORnet include the:

  • Community and Patient-Partnered Centers of Excellence for Behavioral Health at the University of California-Los Angeles;
  • Fox Insight Network at the Michael J. Fox Foundation for Parkinson’s Research;
  • Interactive Autism Network and Hugo Moser Research Institute at the Kennedy Krieger Institute;
  • National Alzheimer’s Dementia Patient Caregiver-Powered Research Network at the Mayo Clinic;
  • OneFlorida Clinical Data Research Network at the University of Florida;
  • Patient-Centered Network of Learning Health Systems at the Mayo Clinic; and
  • Population Research in Identity and Disparities for Equality Patient-Powered Research Network at the UC-San Francisco.

Among other things, the new data networks’ focus areas include:

  • Alzheimer’s disease;
  • Autism;
  • Behavioral health disparities among low-income populations;
  • Heart disease;
  • Health disparities among sexual and gender minorities;
  • Obesity; and
  • Parkinson’s disease (Monegain, Healthcare IT News, 7/22).

During the second stage of development, participating networks must demonstrate strong patient privacy and data security, as well as their ability to support various types of research, including:

  • Large observational and randomized multi-network studies; and
  • Rapid-cycle studies.

Further, the participants will be expected to develop plans to sustain their work beyond the three-year phase (Healthcare Informatics, 7/21).

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