Many Cerebral Palsy Research Network (CPRN) investigators are in Hollywood Florida this week for the 70th annual meeting of the American Academy for Cerebral Palsy and Developmental Medicine (AACPDM). This meeting of the professionals that treat cerebral palsy provides a great opportunity for our first in-person investigator meeting. The CPRN investigators have met telephonically since charter members were selected in February 2016. The meeting is planned for Friday, September 23rd from 12:30 to 1:30 pm at the Diplomat Hotel. The meeting will give investigators an opportunity to discuss CPRN’s progress and future directions. More than 20 investigators have RSVP’ed for the meeting.
CPRN leaders Amy Bailes, Ph.D., Mary Gannotti, Ph.D., Paul Gross and Garey Noritz, M.D. are also slated to present CPRN to members of the academy during a breakfast session also on Friday morning. The speakers will present an overview with details of the CPRN registry data collection through the electronic medical record system, quality improvement initiatives and the adult patient-reported outcomes registry.
AACPDM Community Forum 2016
Paul Gross will also present CPRN to attendees of the AACPDM Community Forum
on Saturday. This event, which is free to the public, runs in parallel with the AACPDM annual meeting to allow people with CP and their caregivers to tap into the expertise of AACPDM membership in attendance at the meeting. CPRN patient engagement director Michele Shusterman of CP Now Foundation and CP Daily Living has organized this year’s Community Forum. This presentation will be the first time that CPRN’s development and activities have been presented to a lay audience and we look forward to the CP community’s feedback.
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
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.
Report of a workshop on research gaps in the treatment of cerebral palsy published on August 24, 2016
In November 2014, the National Institutes of Health (NIH) organized a workshop called the “The state-of-science and treatment in cerebral palsy.” The organizers of the NIH workshop included National Institutes of Neurological Disorders and Stroke (NINDS) program directors Dr. Deborah Hirtz and Dr. Codrin Lungu, Dr. Diane Damiano of the NIH Clinical Center, and NINDS Advisory Council members Paul Gross and Dr. Jonathan Mink, recently authored an article published in Neurology called Report of a workshop on research gaps in the treatment of cerebral palsy. The article details the findings from the workshop including a description of the gaps in CP and the key initiatives recommended as an outcome of the workshop. Neurology is the official journal of the American Academy of Neurology and this publication will increase awareness of the efforts to form a national registry for CP.
A number of the co-founders of the Cerebral Palsy Research Network (CPRN) first met at that workshop. It assigned task force leaders to advance these key initiatives identified in the meeting. Gross was asked to co-lead the initiative to define a national CP registry. Other initiatives included conducting more comparative effectiveness research (CER) on CP treatments, more basic and translational science research and more focus on research of adults with CP. CPRN was born out of the national CP registry initiative and has since incorporated efforts to conduct more CER research (see our PCORI application overview) and the study of adults with CP (see our post on the adult registry). Numerous members of the CPRN leadership team – Paul Gross, Dr. Amy Bailes, Dr. Mary Gannotti and Dr. Garey Noritz – attended the meeting and agreed to advance these initiatives together in the months that followed. We are excited to see our genesis documented in Neurology.