Cerebral Palsy Research Network Blog

Archive for May 2016

CPRN Community Engagement Director is AACPDM Award Recipient

Michele Shusterman, CPRN Community Engagement Director

Michele Shusterman, CPRN Community Engagement Director

CPRN is proud to announce that Michele Shusterman, Community Engagement Director for the CPRN Leadership Team, is receiving the Making a Difference Award at the 70th Annual American Academy for Cerebral Palsy and Developmental Medicine (AACPDM) meeting this year in September, 2016. This award is periodically given to individuals identified as making a substantial impact in the community. In addition, she is presenting at the meeting and her talk is titled “From Chaos to Cohesion: Making Sense of CP for Caregivers.” Michele is also leading the Community Forum, formerly the Family Forum, at the AACPDM meeting this year and was instrumental in allowing community members who have cerebral palsy and their family members/caregivers to register for sessions at a meeting that inherently is a professional meeting for CP providers. This effort demonstrates her commitment to fostering true collaborative, family-centered care.

Michele is the founder of the nonprofit CP NOW Foundation for Advancing Neurorecovery and CP Daily Living, a website and blog for the CP community and caregivers. Both of her organizations’ missions are focused on improving the lives of people with cerebral palsy and their families through education, wellness and support.

CP Toolkit

CPNow’s CP Toolkit: A resource for Families

CP NOW launched this year and it recently released The Cerebral Palsy Tool Kit – From Diagnosis to Understanding, the unprecedented comprehensive resource that will guide you through the initial diagnosis period, direct you to other helpful resources and provide information to you about the different approaches to treating and managing CP. It is available as a free download from CP NOW and also available as a print document through Amazon for the cost of printing.

She lives in South Carolina with her husband Blake, her outspoken and spunky daughter who has CP, and their two beloved Jack Russell Terriers. Congratulations Michele for being the 2016 recipient of the AACPDM’s Making a Difference Award! CPRN appreciates all that you do for the CP Community!

Complete CPRN Registry System Demonstrated

CPRN is excited to announce that a major milestone has been reached with the help of both Texas Scottish Rite Hospital and Nationwide Children’s Hospital regarding EMR rollout.

Texas Scottish Rite Hospital for Children’s (TSRH) Chief Medical Information Officer, Lawson Copley, M.D. demonstrated a complete implementation of the CPRN Registry to the CPRN Investigator Committee on May 9, 2016. Dr. Copley built the CPRN forms for TSRH upcoming Epic electronic medical record system (EMR) rollout. Dr. Copley is an orthopedic surgeon at TSRH who has extensive experience with building EMR based forms that combine clinical visits with research goals. He is also chairs the Pediatric Orthopedic Steering Board, providing advice on structured data collection for orthopedic interventions, for Epic. The work of TSRH has formed the basis for recommendations to Epic for structured data collection for cerebral palsy.

This demonstration gave the CPRN investigators a view of how the whole CPRN Registry will work within the context of the clinical work flow. The Epic forms will ultimately be shared with all CPRN members who are Epic customers. There are seventeen forms in three different categories planned: surgical, clinical and patient reported. The plan for the CPRN Registry is to first roll out the CPRN clinical forms that have been developed by Nationwide Children’s Hospital. This roll out is tentatively scheduled for late summer and will enable multi-center data collection on cerebral palsy patients. This staged approach to the CPRN Registry pilot will accelerate the readiness of CPRN sites to rollout the complete CPRN Registry data collection suite of forms in early 2017.

Dr. Ed Hurvitz Joins CPRN Leadership Team

Ed Hurvitz, M.D.

Ed Hurvitz, M.D.

The Cerebral Palsy Research Network (CPRN) welcomes Edward Hurvitz, M.D. to the CPRN leadership team and Executive Committee. Dr. Hurvitz is Professor and Chair, and James W. Rae Collegiate Professor, Department of Physical Medicine and Rehabilitation (PM&R) at the University of Michigan Medical School. He has been involved in the diagnosis and management of pediatric onset disabilities, especially cerebral palsy (CP) for over 25 years. His research focuses on adolescents and adults, including areas such as health and fitness, health-related outcomes, and transition to adulthood. Dr. Hurvitz has been chair of the department of Physical Medicine and Rehabilitation since 2006. His work with cerebral palsy has led to membership on the Children’s Motor Study Group, an NINDS/NIH sponsored group of experts in the field. He is also currently co-leading the International Cerebral Palsy Health Promotion Group, which is interested in research related to obesity, activity, and risk of chronic disease in adults with cerebral palsy. In 2013, the American Academy of Cerebral Palsy and Developmental Medicine recognized his work with the Chambers Lifespan award and lecture.