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@article{Modi,
author = {Modi, N and Ashby, D and Battersby, C and Brocklehurst, P and Chivers, Z and Costeloe, K and Draper, E and Foster, V and Kemp, J and Majeed, A and Murray, J and Petrou, S and Rogers, K and Santhakumaran, S and Saxena, S and Statnikov, Y and Wong, H and Young, A},
journal = {Programme Grants for Applied Research},
title = {Using routinely recorded clinical data for research: the Medicines for Neonates research programme},
url = {http://hdl.handle.net/10044/1/66809},
}

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TY  - JOUR
AB  - Background: Clinical data offer potential to advance patient care. Neonatal specialised care is a high cost NHS service received by approximately 80,000 newborn infants each year.   Objectives: To 1) develop the use of routinely recorded operational clinical data from Electronic Patient Records (EPR), secure national coverage, evaluate and improve the quality of clinical data, and develop their use as a national resource to improve neonatal healthcare and outcomes; test the hypotheses that 2) clinical and research data are of comparable quality; 3) routine NHS clinical assessment at age two-years reliably identifies children with neurodevelopmental impairment; and 4) trial-based economic evaluations of neonatal interventions can be reliably conducted using clinical data; 5) test methods to link NHS datasets; 6) evaluate parent views of personal data in research  Design: Six interrelated work-streams; quarterly extractions of predefined data from neonatal EPR; approvals from the National Research Ethics Service, Health Research Authority Confidentiality Advisory Group, Caldicott Guardians and lead neonatal clinicians of participating NHS Trusts Setting: NHS neonatal unitsParticipants: Neonatal clinical teams; parents of babies admitted to NHS neonatal unitsInterventions: In work-stream 3 we employed the Bayley-III scales to evaluate neurodevelopmental status and the Quantitative Checklist of Autism in Toddlers (Q-CHAT) to evaluate social-communication skills. In work-stream 6 we recruited parents with previous experience of a child in neonatal care to assist in the design of a questionnaire directed at the parents of infants admitted to neonatal units. Data sources: Data extracted from the EPR of admissions to NHS neonatal units Main outcomes and results: We created a National Neonatal Research Database (NNRD) containing a defined extract from real-time, point-of-care, clinician-entered EPR from all NHS neonatal units in England, Wales and Scotland (n=200), establish
AU  - Modi,N
AU  - Ashby,D
AU  - Battersby,C
AU  - Brocklehurst,P
AU  - Chivers,Z
AU  - Costeloe,K
AU  - Draper,E
AU  - Foster,V
AU  - Kemp,J
AU  - Majeed,A
AU  - Murray,J
AU  - Petrou,S
AU  - Rogers,K
AU  - Santhakumaran,S
AU  - Saxena,S
AU  - Statnikov,Y
AU  - Wong,H
AU  - Young,A
SN  - 2050-4322
TI  - Using routinely recorded clinical data for research: the Medicines for Neonates research programme
T2  - Programme Grants for Applied Research
UR  - http://hdl.handle.net/10044/1/66809
ER  -

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