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The Cambridge Cohort of Open Spina Bifida

dataset
posted on 22.06.2021, 15:57 by Pippa Oakeshott, Fiona Reid
The dataset comprises nine reviews of 117 consecutive infants (50 male) born in 1963-1971 with open spina bifida and treated unselectively within 48 hours of birth at Addenbrooke’s Hospital, Cambridge, UK. The earlier reviews were conducted at home and school at the mean ages of 4 and 9 years and included clinical examination. Later reviews were based mainly on questionnaires (completed by patients and/or carers) and clinical records. The Office for National Statistics provided information on deaths to August 2017. The cohort is unique in having information from detailed neurological examination at birth and 99% follow up to the mean age of 50 years.

Selected publications from this dataset can be found in the 'References' section below. A full reference list with further publications from this work can be found in the README file included in the data package.

This is an anonymised version of this dataset. Dates of birth of cases (who were all born in 1963-1971) are available from the investigators, subject to appropriate approvals.

Funding

Medical Research Council

East Anglian Regional Health Authority

Association for Spina Bifida and Hydrocephalus

Newlife Foundation for Disabled Children

History

Research Institute

Population Health