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National Study of HIV in Pregnancy and Childhood

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Ethics

National surveillance of obstetric and paediatric HIV infection carried out by the NSHPC

Principal Investigator: Dr. Claire Thorne
Sponsor: UCL Great Ormond Street Institute of Child Health
Data Protection Reg No: Z6364106 Section 19
Current funding bodies: Public Health England
National Screening Committee
Ethics approval: 
London REC ref: MREC/04/2/009
Reviewed 28 January 2004, and approved
Amendment (1), Perinatal HIV Audit 2002-2005,reviewed 2 February 2006, and approved. Amendment (2), Perinatal HIV Audit Protocol,reviewed 8 November 2012, and approved.
PIAG/NIGB/CAG: NIGB Ref: PIAG/BPSU 2-10(a)/2005
IG Toolkit Ref: EE133902-SLMS Version 14 (2017)
Confidentiality Advisory Group (CAG) Ref: 15/CAG/0190 (previously 15/CAG/0153)

Patient objection to use of data for research purposes

We collect some personal data items in the NSHPC – this includes NHS number and date of birth, but we do not collect names or addresses. If you are a pregnant woman with HIV and you object to your personal data being used for research purposes, you can let us know (see below) and we will flag your record in the study database, in order to exclude your data from analyses carried out for research. Please note that as the NSHPC carries out surveillance activities for Public Health England under Regulation 3 of the Health Service (Control of Patient Information), it will not be possible to remove your record from our database. To register your objection, you can let someone in your antenatal or HIV team (e.g. the antenatal screening coordinator or your HIV physician) know about your objection and ask them to contact us on your behalf.

Additional information

The British HIV Association, Children’s HIV Association, Perinatal, Paediatric and Young People’s Sub Group of the NHS London Specialised Commissioning Group, and the National Screening Committee all support the NSHPC and encourage clinicians to report all eligible cases to the NSHPC via our routine obstetric and paediatric reporting systems.