Cerebral Palsy Research Network Blog

Archive for September 2016 – Page 2

CPRN Leaders Speak at NIH

CPRN Chairman and Founder Paul Gross and CPRN Data Center Principal Investigator Jacob Kean Ph.D., of the University of Utah and the U.S. Department of Veteran Affairs, presented at a nonprofit forum at the National Library of Medicine in Bethesda, MD this week. The National Institute of Neurological Disorders and Stroke (NINDS) held its 10th annual Nonprofit Forum starting on Tuesday, September 13, 2016. Gross has been part of the organizing committee for the last five years for this two-day event intended to create deeper partnerships among NINDS leadership, staff and the nonprofit disease community focused on neurological conditions.

CPRN Chairman and Founder Paul Gross Speaking at National Library of Medicine

CPRN Chairman and Founder Paul Gross Speaking at National Library of Medicine

Gross is seen here speaking about two technology topics he is passionate about – creating patient registries from electronic medical records and global unique identifiers. He moderated a panel entitled “Data Integration and Data Management: Challenges and Opportunities” with experts on the panel from the National Institute of Mental Health, Harvard Medical School and the Seattle Children’s Research Institute.

Gross recruited Dr. Kean to speak on a panel entitled “Developing Better Clinical Outcome Measures”. Dr. Kean’s expertise in developing meaningful patient-reported outcomes and integrating them into clinical research was well received by the audience of nonprofits. Dr. Kean demonstrated the benefits on “item response theory” for the development of more rigorous and efficient measures. Dr. Kean’s experience in this field was critical to CPRN’s recent PCORI application and our plan to collect patient-reported outcomes for the CPRN Registry.