The Cerebral Palsy Research Network has been established to conduct several types of clinical research and quality initiatives. The network is intended to create a collaborative environment for clinical researchers to establish study questions and quality initiatives. The preliminary data provided by the registry will allow researchers in the network to write more robust grant applications to public funders because of the richness of the data and the proven collaboration of the network.
The registry, or core data project, is intended to capture demographics, diagnostic information, intervention (medical, surgical and therapeutic) details and some outcome measures. The goal of the core data project is to support future in depth research questions and quality initiatives.
Research questions may range from very specific intervention strategies, e.g., what combination of muscle lengthening, osteotomies, and spasticity reduction techniques (rhizotomy or Baclofen pumps) and physical therapy produce the best results for a given cohort of children.
Quality initiatives will come from finding practice variations at different centers revealed by the registry. An example quality initiative is how might the post surgical infection rate be reduced for Baclofen pumps. Quality Improvement methodology demonstrates that by standardizing the protocol, outcomes will improve. Ultimately the core data project will enable a very broad array of clinically relevant research.
Cerebral Palsy Registry
The registry, or core data project, consists of multiple sub cores that have specialty specific related data per patient. Initial patient demographics and diagnosis will be captured at the point of entry into a CP or spasticity clinic at a participating institution. Data will be captured from initial visits with any of the following doctors: physical medicine and rehabilitation, neurology or developmental pediatricians. Depending on the age and diagnosis of the child, additional core information may be entered by physical and/or occupational therapy, orthopedic surgery or neurosurgery.
These cores contain a minimal subset of clinical data necessary to characterize the patient or the medical, surgical and therapeutic interventions. Additional outcome measures may be captured as well.
Study Questions
Study questions will be developed by the participating clinicians and therapists with an interest in clinical research. A scientific committee and patient advisory group will determine the priority of studies to be developed into pilots or written up as grant applications.
Quality Initiatives
Quality initiatives will be considered after a period of registry data collection. Many centers have that have created single center de novo registries have found that quality improved just from standardizing the collection of patient / treatment data. Quality Improvement processes are well documented and represent a significant benefit that will come from the CP Research Network.
Data Collection Mechanisms
After the standardization of data to be collected in the registry is complete, the data collection mechanisms will be standardized across centers to meet the needs of individual centers Electronic Medical Records (EMR) systems. Many centers use EPIC and we will seek to create a standard set of CP Research Network flow sheets for EPIC that can be integrated into clinical care. One fundamental principle of the CP Research Network is to collect clinically relevant data once at the point of clinical care by the practitioner interacting with the patient. No paper forms or clinical research assistants will be involved in data collection for the core data project. Funded research studies may seek to collect significantly more data requiring the development of additional data collection paradigms.
