Cerebral Palsy Research Network Clinical Registry: Methodology and Baseline Report
| Autor: | Amy F Bailes, Jerry Oakes, Unni G. Narayanan, Mary E. Gannotti, Garey Noritz, Paul Gross, Jacob Kean, Susan D. Horn |
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| Rok vydání: | 2020 |
| Předmět: |
OT
occupational therapy CER comparative effectiveness research IRB Institutional Review Board Quality management medicine.medical_treatment Population Comparative effectiveness research Psychological intervention HCRN Hydrocephalus Clinical Research Network Cerebral palsy EHR electronic health record medicine Quality improvement CP cerebral palsy education Baseline (configuration management) NINDS National Institute of Neurological Disorders and Stroke PT physical therapy Original Research QI quality improvement lcsh:R5-920 education.field_of_study Rehabilitation Data collection LFEP Learn from Every Patient business.industry REDCap Research Electronic Data Capture registries General Medicine medicine.disease GMFCS Gross Motor Function Classification System CDE common data element SLP speech language pathology CPRN Cerebral Palsy Research Network VON Vermont Oxford Network Medical emergency lcsh:Medicine (General) business NCH Nationwide Children’s Hospital |
| Zdroj: | Archives of Rehabilitation Research and Clinical Translation, Vol 2, Iss 3, Pp 100054-(2020) Archives of Rehabilitation Research and Clinical Translation |
| ISSN: | 2590-1095 |
| DOI: | 10.1016/j.arrct.2020.100054 |
| Popis: | Objective To apply practice-based evidence to clinical management of cerebral palsy (CP). The process of establishing purpose, structure, logistics, and elements of a multi-institutional registry and the baseline characteristics of initial enrollees are reported. Design A consensus-building process among consumers, clinicians, and researchers used a participatory action process. Setting Community, hospitals, and universities. Participants More than 100 clinicians, researchers, and consumers and more than 1858 enrollees in the registry. Main outcome measures Not applicable. Results Consensus was that the purpose of registry was to (1) quantify practice variation, (2) facilitate quality improvement (QI), and (3) perform comparative effectiveness research (CER). Collecting data during routine clinical care using the electronic medical record was determined to be a sustainable plan for data acquisition and management. Clinicians from multiple disciplines defined salient characteristics of individuals and interventions for the registry elements. The registry was central to the clinical research network, and a leadership structure was created. A leading electronic health record platform adopted the registry elements. Twenty-four sites have initiated the data collection process and agreed to export data to the registry. Currently 12 are collecting data. Number of enrollees and characteristics were similar to other population registers. Conclusions This is the first multi-institutional CP registry that contains the patient and treatment characteristics needed for QI and CER. The Cerebral Palsy Research Network registry elements are implemented in a versatile electronic platform and minimize burden to clinicians. The resultant registry is available for any institution to participate and is growing rapidly. |
| Databáze: | OpenAIRE |
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