Cerebral Palsy Research Network Blog

Archive for October 2015

Join the Cerebral Palsy Research Network

Following our introduction at the American Academy for Cerebral Palsy and Developmental Medicine (AACPDM) meeting last week, several individuals asked us about how to join. As we move from our cerebral palsy registry definition phase to our pilot phase, we are first seeking sites that want to be charter member sites for CPRN before we open registry participation up more broadly (anticipated in September 2016).

Charter site membership of CPRN is defined as those sites that:

  1. Participate in the pilot phase and initial operating phase of the CPRN clinical data registry.
  2. Participate in the defining of the research network’s Standard Operating Procedures.

Our past experience building the Hydrocephalus Clinical Research Network shows that substantial benefits accrue to the institutions and participants in clinical research networks including:

  • increasing academic opportunity,
  • enabling high-quality research,
  • providing an enriched training environment,
  • improving treatments and outcomes for patients.

Charter site members will need to demonstrate significant commitment to research, inter- and intra-institutional collaboration and institutional support of research activities. Preference will be given first to individuals and their institutions that participated actively in the registry definition phase of CPRN and/or the PCORI application.

Charter membership, once granted, will be on a trial basis. Criteria used to determine progress:

  • Achieving pilot phase milestones including: IT progress, IRB approvals, execution of data use agreements, and enrolling of patients
  • Participation in collaborative efforts will be critical to the trial period.

Road map to CPRN Charter Membership

If you are interested in applying for charter membership to CPRN, please take the following survey. If you are interested in being a registry participant after the pilot phase is over (targeted for September 2016), please sign up for alerts on the homepage and take this survey about your clinical practice at your institution.

The key steps to be a charter member include:

  1. Getting alignment with your peers who treat CP – developmental pediatricians, neurologists, physiatrists, surgeons (orthopaedic and neurosurgery), and therapists. Is everyone on board with this effort? Are they prepared to change how they capture data about a patient visit or intervention? Will the surgeons make the commitment to using this synoptic reporting method for their postoperative notes or as an adjunct?
  2. Working it up the management chain to get the IT effort prioritized. This effort will likely require that your Chief Medical Information Officer and Chief of Surgery are supportive. They will need to convince the CIO to make this a priority. It shouldn’t require too much effort if your institution’s EMR is Epic, but getting it to the top of the list will be a challenge. If you are on another EMR, there would need to be a more significant investment of IT resources to build. We will help you with the process.
  3. Establishing a Principal Investigator (PI) as the lead contact for the effort for your institution. The PI will be expected to be on a bi-weekly call for one hour to advance the work of the network. The PI will also be responsible for getting the other resources to follow-up.

Additional questions? Send your questions to join@cpresearch.net

CPRN’s Potential to Transform Cerebral Palsy Research

“It has been transformative for our field,” said Shenandoah “Dody” Robinson, M.D., a pediatric neurosurgeon at Boston Children’s Hospital, referring to the Hydrocephalus Clinical Research Network (HCRN), during a Cerebral Palsy Research Network (CPRN) information session at the annual American Academy for Cerebral Palsy and Developmental Medicine (AACPDM) meeting on Friday, October 24, 2015. The goal of CPRN is to be a collaborative research effort to improve treatments and outcomes of those with cerebral palsy.

CPRN has Potential to be Transformative!

CPRN Founder Paul Gross introduces Cerebral Palsy Research Network in general session address to AACPDM.

Paul H. Gross, the co-founder of HCRN, is building CPRN with the same principles as HCRN to transform cerebral palsy research. Because of his work raising awareness for cerebral palsy at NIH and founding CPRN, the Academy presented him with the “Making a Difference” award at its annual meeting in Austin, Texas on October 23, 2015. In his general session speech, “From Anxiety to Impact: Focusing Parental Energy on Advancing Research,” Gross introduced the idea and progress of CPRN to an audience of 1,100 physicians and medical practitioners who treat patients with cerebral palsy (CP) and conduct research. The attendees were buzzing about the concept of a multi-center collaborative research effort to improve CP treatments and outcomes.

CPRN leadership team members Bailes, Gannotti, Gross and Narayanan answer questions

CPRN leadership team members Bailes, Gannotti, Gross and Narayanan answer questions at information session at AACPDM meeting.

To build a research network requires team work and CPRN has assembled an experienced and committed group with its CPRN leaders. At the session, team members Amy Bailes, PhD PT MS, PCS, Mary Ganotti, PhD PT and Unni Narayanan, MBBS, M.Sc. FRCS(C) joined Gross for a Q&A session in a packed room with over 50 people on Friday evening.

The group discussed anticipated milestones, how to participate in CPRN, charter membership and how its Common Data Model (CDM) relates to the AACPDM effort to create Common Data Elements (CDE). Attendees from Nationwide Children’s Hospital emphasized the productivity gains from their use of Epic for the collection registry data. Information session attendees expressed a high degree of interest in participating in the CPRN registry. To receive CPRN updates, please follow by submitting your email address for alerts or contact info@cpresearch.net for more information.

Cerebral Palsy Common Data Model Reviewed

The participants in the Cerebral Palsy Research Network (CPRN) completed a cross discipline review of the CPRN registry’s cerebral palsy Common Data Model (CDM) last week. The CDM consists of all of the data elements that have been defined by each of the four discipline groups – non-surgical doctors (developmental pediatricians, neurologists and physiatrists), orthopedic surgeons, neurosurgeons and the physical and occupational therapists. These data elements will be collected as a part of routine clinical visits and surgical interventions for cerebral palsy at participating CPRN sites and form the basis for the CPRN registry. These planned 200 data elements characterize the patient and the interventions (medical, surgical and therapeutic). An additional set of data elements will be entered by the patients and caregivers filling out surveys that characterize patient outcomes.

This milestone is significant for CPRN as it enables the CPRN registry database to be built. Over the coming weeks, the final qualifications will be defined for these elements – data types and ranges – that assure high quality data collection and reliability. Completion of this step enables the creation of the front-end data collection system that will be hosted by the electronic medical record (EMR) system at participating CPRN centers. Both the front end and back end systems are planned for creation in November clearing the path to pilot the CPRN registry in early 2016.