The Cerebral Palsy Research Network (CPRN) announced that its third publication entitled “Cerebral Palsy Research Network Clinical Registry: Methodology and Baseline Report” was published in Archives of Rehabilitation Research and Clinical Translation this past week.  The publication is “open access” meaning that anyone from the cerebral palsy (CP) community can read the article free of charge.  The article, authored by the founding members of the CPRN Executive Committee, describes the creation of the CPRN Registry from a process perspective – who was involved, what were the objectives and how and why were the data elements chosen for inclusion in the registry.

In addition to defining the process, the article also provides a baseline registry report for the first few years of data collection.  This preliminary report provides a descriptive analysis of the first 1858 patients – demographics, movement disorder, gross motor capabilities, and other clinical characteristics — included in the registry from eight sites.  Since this articled was drafted, the registry has grown to more than four thousand patients from 10 sites.  The registry is expected to continue to grow in step functions as more sites come online with their clinical practice supporting the registry.

The article also discusses how the CPRN registry uniquely leverages hospital electronic medical records (EMR) systems to include large volumes of data without burdening clinicians.  The CPRN registry database has been built into Epic – one of the leading EMR systems.  Development is underway for Cerner – another leading EMR system. The discussion section of the article also compares the focus of the CPRN Registry to the Common Data Elements for CP as defined by the National Institute of Neurological Disorders and Stroke in conjunction with the American Academy for Cerebral Palsy and Developmental Medicine.

CPRN’s other publications can be found on our publications page.

The Cerebral Palsy Research Network (CPRN) announced that its next webinar in its MyCP Webinar Series will feature Unni Narayanan, MD, MSc who is a pediatric orthopedic surgeon at SickKids in Toronto, Canada on Monday, August 17, at 8 pm ET. The topic is “Can we make patient reported outcome measures useful to patients and parents?” Dr. Narayanan has developed several patient-reported outcome (PRO) measures to assess the effectiveness of surgical interventions in cerebral palsy (CP). Now his research is seeking to determine if those PROs can be used to facilitate a shared decision making between patients/caregivers and clinicians. Shared decision making is a process by which clinicians and patients or caregivers collaborate to understand the evidence base behind interventions and the tradeoffs between interventions or alternatives to surgeries and medications. Shared decision making is very important in CP because most surgeries are elective. Dr. Narayanan will present his recently funded research project being done in conjunction with CPRN and then take questions from attendees. The presentation will be approximately 20 minutes followed by an open ended Q&A.

Parents, caregivers and adults with CP can access the PROs developed by Dr. Narayanan by joining MyCP.org where they can be found in the CPRN Community Registry. After completing one of these measures, you can print out the results to share them with your CP physician and facilitate the shared decision making process now!

Interested participants need to register for the webinar to be sent instructions for joining.  Webinars will be recorded and posted for later viewing.  The MyCP Webinar series includes one presentation per month on different aspects of CPRN’s research studies.  Please join us!

On Wednesday, July 8 at 8 pm ET, we are excited to interview author Lily Collison who is the mother of a young adult with spastic diplegia. Ms. Collison was inspired to write a book, a manual of sorts, for parents of children with spastic diplegia bilateral cerebral palsy to share the many learnings she has had on her journey with her son and his CP. He recently underwent a selective dorsal rhizotomy for the treatment of his CP.

And then MyCP webinar series continues with episode #5 as Dr. Michael Kruer describes his work in genetics and cerebral palsy (CP) entitled “Genetics and cerebral palsy — what difference does it make?” Dr. Kruer is a leading researcher in CP genetics and was recently awarded a three million dollar grant to study genetic factors in CP in partnership with the Cerebral Palsy Research Network. He is also the chairman of the International Cerebral Palsy Genomics Consortium. His presentation on Thursday, July 23 at 8 pm ET (NOTE: we moved this event from July 9) will describe the importance of understanding the genetics underlying CP and how his research will unlock important new findings about causes, treatments and outcomes.

Both webinars will last approximately 50 minutes and be split equally between presentation/interview and open Q&A with attendees. If you haven’t signed up for the MyCP webinar series, sign up to receive webinar invite information via email. Both webinars will be recorded and available for future viewing.