Following our introduction at the American Academy of 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:
- Participate in the pilot phase and initial operating phase of the CPRN clinical data registry.
- 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:
- 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?
- 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.
- 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 email@example.com