The Cerebral Palsy Registry is the core data project of the Cerebral Palsy Research Network (CPRN). The cerebral palsy registry is a database of patients that are enrolled from all the CPRN participating centers. It contains demographic information about the patient such as birth date, gender, race, ethnicity and diagnostic data such as the type of cerebral palsy, the limbs that are affected, the etiology and assessment on the Gross Motor Classification Functional Scale. It also contains information about medical, orthopedic and neurosurgical interventions as well as physical and occupational therapy. This information is entered by the clinician at the participating center with the consent of the patient or patient caregiver. Additional patient reported goals and outcomes are included in the cerebral palsy registry.
Information collected at a participating center is then securely transferred to the Data Coordinating Center (DCC) at the University of Utah for aggregation in the CPRN registry. The patient data sent to the DCC is anonymized — removing name, Social Security number and address information — so that only the center that treated the patient has information to directly identify the patient. The registry enables an unprecendented scale of patient data from multiple centers that can be used for study planning, finding practice variation and defining quality improvement initiatives. The analysis to support this work is done by the biostatistical staff at the DCC in conjunction with Principal Investigators (PIs) in CPRN.
There are many types of registries each serving a fundamentally different purpose. Most of the national cerebral palsy registries are “population based”. These registries seek to get a representative sample of the population and are very important for understand trends in a condition (is the incidence increasing or decreasing) and risk factors for a condition or disease. Another common use for a registry is to enable future contact for research. These registries can either be patient reported or clinician reported registries. There is an existing CP registry that is patient reported (cpregistry.org) that is used to contact patients/caregivers for future research projects. The CPRN registry is a clinician reported registry that is intended for future research as well. But the nature of a clinician reported registry that is collected at centers has the potential to also inform practice variation that can lead to significant quality improvement protocols. If you would like to learn more about patient registries in general, you can read the following article published online by the National Library of Medicine.
Research networks often center around a registry as an asset forplanning studies and finding relevant patients for inclusion in the study. A research network is a group of researchers that collaborate on a multiple studies about a disease or condition. The network exists to advance high quality research about the condition. Research networks establish operating principles to include researchers and institutions, prioritize study questions, plan protocols, pool patient populations and implement studies. Funding of studies is often the result of a grant application to a funding agency such as the National Institutes of Health, the Patient Centered Outcomes Research Institute, an industry partner or a large foundation.