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1.
BMJ Open ; 14(1): e076711, 2024 01 18.
Article in English | MEDLINE | ID: mdl-38238056

ABSTRACT

PURPOSE: Using Wales's national dataset for maternity and births as a core dataset, we have linked related datasets to create a more complete and comprehensive entire country birth cohort. Data of anonymised identified persons are linked on the individual level to data from health, social care and education data within the Secure Anonymised Information Linkage (SAIL) Databank. Each individual is assigned an encrypted Anonymised Linking Field; this field is used to link anonymised individuals across datasets. We present the descriptive data available in the core dataset, and the future expansion plans for the database beyond its initial development stage. PARTICIPANTS: Descriptive information from 2011 to 2023 has been gathered from the National Community Child Health Database (NCCHD) in SAIL. This comprehensive dataset comprises over 400 000 child electronic records. Additionally, survey responses about health and well-being from a cross-section of the population including 2500 parents and 30 000 primary school children have been collected for enriched personal responses and linkage to the data spine. FINDINGS TO DATE: The electronic cohort comprises all children born in Wales since 2011, with follow-up conducted until they finish primary school at age 11. The child cohort is 51%: 49% female: male, and 7.8% are from ethnic minority backgrounds. When considering age distribution, 26.8% of children are under the age of 5, while 63.2% fall within the age range of 5-11. FUTURE PLANS: Born in Wales will expand by 30 000 new births annually in Wales (in NCCHD), while including follow-up data of children and parents already in the database. Supplementary datasets complement the existing linkage, including primary care, hospital data, educational attainment and social care. Future research includes exploring the long-term implications of COVID-19 on child health and development, and examining the impact of parental work environment on child health and development.


Subject(s)
Birth Cohort , Ethnicity , Pregnancy , Child , Humans , Male , Female , Wales/epidemiology , Life Change Events , Minority Groups , Information Storage and Retrieval , Parents
2.
BMJ Open ; 12(4): e049441, 2022 04 13.
Article in English | MEDLINE | ID: mdl-35418418

ABSTRACT

OBJECTIVE: To examine if mortality rates are lower in people with intellectual disability who have had a health check compared with those who have not had health checks. SETTING: General practice records of 26 954 people with an intellectual disability in Wales between 2005-2017, of which 7650 (28.4%) with a health check were matched 1:2 with those without a health check. PRIMARY OUTCOME MEASURE: Office of National Statistics mortality data; a Cox regression was utilised to examine time to death adjusted for comorbidities and gender. RESULTS: Patients who had a health check were stratified by those who (1) had a confirmed health check, that is, Read Code for a health check (n=7650 (28.4 %)) and (2) had no evidence of receiving a health check in their medical record. Patients with a health check were matched for age at time of health check with two people who did not have a health check. The health check was associated with improved survival for those with autism or Down's Syndrome (HR 0.58 (95% CI 0.37 to 0.91) and HR 0.76 (95% CI 0.64 to 0.91), respectively). There was no evidence of improved survival for those diagnosed with diabetes or cancer. The people who had a health check were more likely to be older, have epilepsy and less likely to have autism or Down's syndrome. CONCLUSIONS: Health checks are likely to influence survival if started before a person is diagnosed with a chronic condition, especially for people with autism or Down's syndrome.


Subject(s)
Down Syndrome , Intellectual Disability , Adult , Cohort Studies , Electronics , Humans , Survival Rate , Wales/epidemiology
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