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Linking data from a large clinical trial with the Australian Cerebral Palsy Register
Author(s) -
Shepherd Emily,
Mcintyre Sarah,
SmithersSheedy Hayley,
Ashwood Pat,
Sullivan Thomas R,
Velde Anna,
Doyle Lex W,
Makrides Maria,
Middleton Philippa,
Crowther Caroline A
Publication year - 2020
Publication title -
developmental medicine and child neurology
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.658
H-Index - 143
eISSN - 1469-8749
pISSN - 0012-1622
DOI - 10.1111/dmcn.14556
Subject(s) - cerebral palsy , medicine , confidence interval , psychological intervention , medical record , randomized controlled trial , pediatrics , physical therapy , surgery , psychiatry
Aim To link data from a large maternal perinatal trial with the Australian Cerebral Palsy Register (ACPR) to identify children with cerebral palsy (CP). Method Deidentified data from the Australasian Collaborative Trial of Magnesium Sulphate (ACTOMgSO 4 ) and the ACPR were linked. Children born from 1996 to 2000 at Australian hospitals who survived and had 2‐year paediatric assessments were included. Children identified with CP in: (1) both the ACTOMgSO 4 (2y) and the ACPR (5y), (2) the ACTOMgSO 4 only, and (3) the ACPR only were compared. Results We included 913 children (492 males, 421 females; mean gestational age at birth 27.8wks [standard deviation 2.1wks]; range 23.0–40.0wks). Eighty‐four children received a CP diagnosis: 35 by the ACTOMgSO 4 and the ACPR, 29 by the ACTOMgSO 4 only, and 20 by the ACPR only. The ACTOMgSO 4 diagnosed 76.2% (95% confidence interval [CI] 65.9–84.1) and the ACPR identified 65.5% (95% CI 54.7–74.9). Children born in states/territories with long‐standing versus more recently established registers were more likely to be included on the ACPR ( p <0.05). Interpretation Linking deidentified perinatal trial data with the ACPR was achieved. Limitations of both strategies for identifying children with CP in this era (late 1990s and early 2000s) probably explain many of the differences observed, and inform future linkage studies and evaluations of CP‐preventive interventions. What this paper adds Randomized trial data were linked with the Australian Cerebral Palsy Register. Trial (2y) and register (up to 5y) diagnoses of cerebral palsy (CP) differed. States with long‐standing registers were more likely to include children with CP.