Cerebral Palsy Research Network Clinical Registry: Methodology and Baseline Report.
Paul Gross, Mary Gannotti, Amy Bailes and 5 others
PMID 33543081WHAT IT FOUND
A new cerebral palsy registry has enrolled 1,858 patients across 12 sites.
It captures routine care data but currently misses key therapy details like dose and duration, and has high missing data rates for communication and feeding. It is not yet ready to answer questions about which treatments work best.
Key findings
01The registry has enrolled 1,858 unique patients across clinical sites using electronic health records.
02There are high rates of missing data for functional classifications, visual impairment, hearing impairment, and constipation.
03The current version of the registry does not capture the intensity, duration, or focus of therapy, only the frequency.
STILL TO COME
How it was doneWhat they foundWhat it means for PTsWhat it means for OTsWhat it means for SLPs
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What it does not show
High rates of missing data for key functional classifications (Manual Ability, Communication) and impairments (visual, hearing). The registry does not capture therapy intensity, duration, or focus, only frequency. Data is biased toward participating sites and patients, which may not represent the broader cerebral palsy population. The current version omits several areas of CP treatment, including spine and upper extremity orthopedic interventions. Occupational, speech, and language therapy elements are underrepresented compared to physical therapy.
Declared interests
The paper does not explicitly state funding sources or conflicts of interest in the provided text, though it mentions funding was secured for the network establishment and notes the involvement of the National Institute of Neurological Disorders and Stroke (NINDS) in the consensus process.
The easy way to misread this
Do not interpret the baseline demographic data as evidence of treatment effectiveness. The registry currently lacks detailed data on therapy intensity, duration, and focus, and has high missing data rates for functional classifications, meaning it cannot yet answer questions about which specific interventions work best for cerebral palsy.