Dataset Information

Cerebral Palsy Research Network Clinical Registry: Methodology and Baseline Report.

ABSTRACT:

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.

SUBMITTER: Gross P

PROVIDER: S-EPMC7853390 | biostudies-literature | 2020 Sep

REPOSITORIES: biostudies-literature

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Publications

Cerebral Palsy Research Network Clinical Registry: Methodology and Baseline Report.

Gross Paul P Gannotti Mary M Bailes Amy A Horn Susan D SD Kean Jacob J Narayanan Unni G UG Oakes Jerry J Noritz Garey G

Archives of rehabilitation research and clinical translation 20200419 3

<h4>Objective</h4>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.<h4>Design</h4>A consensus-building process among consumers, clinicians, and researchers used a participatory action process.<h4>Setting</h4>Community, hospitals, and universities.<h4>Participants</h4>More than 100 clinicians, re ...[more]

PMID: 33543081

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Project description:The aims of this study were to provide a comprehensive summary of the body of research disseminated by Cerebral Palsy (CP) registries and surveillance programs from January 2009 through May 2014 in order to describe the influence their results have on our overall understanding of CP. Secondly, registries/surveillance programs and the work they produced were evaluated and grouped using standardized definitions and classification systems. A systematic review search in PubMed, CINAH and Embase for original articles published from 1 January 2009 to 20 May 2014 originating from or supported by population based CP registries and surveillance programs or population based national registries including CP were included. Articles were grouped by 2009 World CP Registry Congress aim, registry/surveillance program classification, geographical region, and the International Classification of Function, Disability and Health (ICF) domain. Registry variables were assessed using the ICF-CY classification. Literature searches returned 177 articles meeting inclusion criteria. The majority (69%) of registry/surveillance program productivity was related to contributions as a Resource for CP Research. Prevention (23%) and Surveillance (22%) articles were other areas of achievement, but fewer articles were published in the areas of Planning (17%) and Raising the Profile of CP (2%). There was a range of registry/surveillance program classifications contributing to this productivity, and representation from multiple areas of the globe, although most of the articles originated in Europe, Australia, and Canada. The domains of the ICF that were primarily covered included body structures and function at the early stages of life. Encouragingly, a variety of CP registry/surveillance program initiatives included additional ICF domains of participation and environmental and personal factors. CP registries and surveillance programs, including novel non-traditional ones, have significantly contributed to the understanding of how CP affects individuals, families and society. Moving forward, the global CP registry/surveillance program community should continue to strive for uniformity in CP definitions, variables collected and consistency with international initiatives like the ICF so that databases can be consolidated for research use. Adaptation to new technologies can improve access, reduce cost and facilitate information transfer between registrants, researchers and registries/surveillance programs. Finally, increased efforts in documenting variables of individuals with CP into adulthood should be made in order to expand our understanding of CP across the lifespan.

Dataset Information

Cerebral Palsy Research Network Clinical Registry: Methodology and Baseline Report.

Objective

Design

Setting

Participants

Main outcome measures

Results

Conclusions

Publications

Cerebral Palsy Research Network Clinical Registry: Methodology and Baseline Report.

Similar Datasets

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