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The UK Collaborative HIV Cohort (UK CHIC) Study

The UK Collaborative HIV Cohort (UK CHIC) Study. Background. Information on HIV infection in the UK comes from a variety of sources; these are often limited in scope Many clinical centres routinely collect information about HIV-positive patients when they attend:

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The UK Collaborative HIV Cohort (UK CHIC) Study

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  1. The UK Collaborative HIV Cohort (UK CHIC) Study

  2. Background • Information on HIV infection in the UK comes from a variety of sources; these are often limited in scope • Many clinical centres routinely collect information about HIV-positive patients when they attend: • This provides an ideal opportunity to study HIV-positive individuals in their clinical setting. • Existing infrastructure can be used for data collection. • Patients from a wide variety of clinics are included so that the cohort becomes more representative of HIV-positive people in the UK.

  3. UK CHIC: Objectives • UK CHIC initiated in 2001 to collate routinely collected data from HIV-positive patients attending some of the largest clinical centres in the UK since 1st January 1996 • Specific aims are: • to describe the characteristics of patients with HIV under care • to provide information on exposure to combination antiretroviral therapy (cART) and changes to the immunological, virological and clinical status of patients over time • to monitor the frequency of AIDS and survival over time.

  4. UK CHIC: Participating clinics

  5. Inclusion criteria • Patients: • aged > 16 years and seen at any of the centres since 1/1/1996 • Clinics: • electronic data are available • able to provide data on an annual basis

  6. Funding • Study funded by the MRC since 2001 • Funding provides: • some database programming support • project co-ordination • statistical support • limited funding for clinics for provision of data • The database is physically located at MRC CTU – centrally located and ‘independent’ of all clinical centres • The project co-ordinator, principal investigator and study statistician are based at UCL (Royal Free campus)

  7. Study management Steering committee meets every 1-2 times/year with representatives from: • - each clinical centre • - the coordinating centre • - the UK Resistance Database • - the patient community Specific sub-groups: - data management - viral hepatitis co-infection - pregnancy - HIV and ageing - renal outcomes

  8. Data protection policy • Policy drafted by a sub-group with input from experts in health informatics • IG Toolkit for MRC CTU + study specific IG Toolkit approved • Data are submitted by secure email, plus encryption • Database access is restricted and monitored • Datasets released for research analyses are approved by the steering committee, are anonymised, and only include necessary data • Staff with access to the data must follow UCL information security and data management policies

  9. Processes Datasets and formats agreed upon by all centres Data sent to coordinator by centres Data checked for consistency Data entered into main database; error and logical checks performed Data from all centres merged and possible duplicates identified Final dataset distributed for analysis Errors checked and corrected on source and submitted dataset Results fed back to clinics and data managers Subset of records audited

  10. Datasets HLA-B*5701 Hepatitis - A/B/C tests - clinical data Attendance Clinical events - AIDS - serious non-AIDS - death Demographics (patient, centre, ethnicity, risk group, first and last attendance) Antiretroviral therapy Adherence Prophylaxis (PCP) (No longer collected) CD4 viral loads Laboratory-defined toxicities ? future data items

  11. Data quality checks • missing data items (demographics, drug names, CD4/CD8 counts, HIV RNA) • duplicate patients within same centre • duplicate laboratory measurements or AIDS events • undetectable viral load at start of treatment • CD4 or CD8 counts of zero • inconsistent data and dates (e.g. HIV+ve date before HIV-ve date, any odd or future dates) • overlapping drug start/stop dates All queries are investigated and both CHIC and clinic databases are updated with corrected information

  12. De-duplication process Individuals may have attended more than one clinical centre. Potential matches identified by matching date of birth and soundex; other demographic variables are used to determine whether potential matches are definite or indeterminate, e.g. - HIV+ve dates in same calendar year - dates of death within 1 month - transferred to/from same centre - first/last seen dates are consistent - same country of birth (non-UK only) Once duplicate patients have been identified, data from individual records are combined.

  13. Improving death data • Many patients do not ‘reappear’ at their clinics for long periods of time; some of these may have left the country and/or may have died. • UK CHIC records are matched to records held at the PHE (death registries and data from Office of National Statistics). • Matches are sent to centres to check that no evidence exists that the patient is still alive; when confirmed, the database is updated. • Cause of death information is collected on forms for deaths =>2006

  14. Audit of data • 1% of records from each centre are audited. • Each record ‘recreated’ using data obtained from clinical notes and compared with information stored on database (not CD4 or viral load). • Exact match required for demographic data, and date to within 1 month for dates of starting ART and AIDS events. • Demographic data generally reasonable (a few problems with ethnicity and country of birth); some discrepancies in AIDS events or dates. • Some AIDS events and ARV drugs found in notes but not database and vice versa.

  15. Link to UK HIV Drug Resistance Database • UK CHIC is linked with UK Collaborative Group on HIV Drug Resistance, set up in 2001 to collect information on routinely performed resistance tests in the UK. • Resistance test data (sequences) are collected. • There is substantial overlap of patients in the two databases so clinical information is shared. • Results of over 134,000 resistance tests relating to 87,800 patients are stored on the database – 33,500 patients have linked clinical data in the UK CHIC study (data to end of 2015).

  16. Key findings

  17. Characteristics of cohort CHIC 2018 dataset

  18. Study outputs

  19. Collaborations TDM Registry University of Liverpool Collaborative HIV Paediatric Study (CHIPS) European COHERE collaboration UK HIV Drug Resistance database National Study of HIV in Pregnancy and Childhood (NSHPC) Statistical research/ methodology groups Public Health England (surveillance)

  20. Acknowledgements • Steering Committee: • Jonathan Ainsworth, Sris Allan, Jane Anderson, Ade Apoola, David Chadwick, Duncan Churchill, Valerie Delpech, David Dunn, Ian Fairley, Ashini Fox, Richard Gilson, Mark Gompels, Rajesh Hembrom, Teresa Hill, Margaret Johnson, Stephen Kegg, Clifford Leen, Derek Macallan, Dushyant Mital, Mark Nelson, Hajra Okhai, Chloe Orkin, Adrian Palfreeman, Andrew Phillips, Deenan Pillay, Frank Post, Ashley Price, Jillian Pritchard, Caroline Sabin (PI), Achim Schwenk, Anjum Tariq, Roy Trevelion, Andy Ustianowski, John Walsh. • Central Co-ordination: UCL (David Dunn, Teresa Hill, Hajra Okhai, Andrew Phillips, Caroline Sabin); Medical Research Council Clinical Trials Unit [MRC CTU at UCL] (Nadine van Looy, Keith Fairbrother). • Participating sites: • Brighton and Sussex University Hospitals NHS Trust(D Churchill, S Tilbury, E Youssef); Chelsea and Westminster Hospital NHS Foundation Trust, London (M Nelson, R Daly, D Saul, D Asboe, S Mandalia); King’s College Hospital NHS Foundation Trust, London(F Post, A Adefisan, L Campbell, C Taylor, Z Gleisner, F Ibrahim); Mortimer Market Centre, Central and North West London NHS Foundation Trust/University College London (R Gilson, S Ogunnaike, I Runcie-Unger, I Williams); Royal Free NHS Foundation (M Johnson, M Youle, F Lampe, C Smith, R Tsintas, C Chaloner, A Nightingale, J Hazell); Imperial College Healthcare NHS Trust, London (J Walsh, N Mackie, A Winston, J Weber, F Ramzan, M Carder); Barts and The London NHS Trust, London (C Orkin, J Lynch, J Hand); Homerton University Hospital NHS Trust, London(J Anderson, S Munshi); North Middlesex University Hospital NHS Trust, London (J Ainsworth, A Schwenk, S Miller, C Wood); The Lothian University Hospitals NHS Trust, Edinburgh (C Leen, A Kerr, S Morris); North Bristol NHS Trust (M Gompels, S Allan); Leicester,University Hospitals of Leicester NHS Trust(A Palfreeman, A Lewszuk, K Ellis); Middlesbrough, South Tees Hospitals NHS Foundation Trust (D Chadwick, K Baillie, J Knowles, M Branch); Woolwich,Lewisham and Greenwich NHS Trust(S Kegg, V Ogunbiyi, D Coley, S Mitchell), St George’s Healthcare NHS Trust(D Macallan, P Hay, C Hunt, O Okolo, B Watts); York Teaching Hospital NHS Foundation Trust (I Fairley, S Russell-Sharpe); Coventry, University Hospitals Coventry and Warwickshire NHS Trust(S Allan, D Brain); Wolverhampton, The Royal Wolverhampton Hospitals NHS Trust(A Tariq, S Milgate, L Radford); Chertsey, Ashford and St Peter’s Hospitals NHS Foundation Trust(J Pritchard, S Cumming, C Atkinson);Milton Keynes University Hospital NHS Foundation Trust(D Mital, A Rose, J Smith, J Turner); North Manchester, Pennine Acute Hospitals NHS Trust (A Ustianowski, C Murphy, I Gunder); Nottingham University Hospitals NHS Trust (A Fox, H Gees, L Anderson, G Squires, S Chadwick); Kent Community Health NHS Foundation Trust (R Hembrom, J Clements, C Marlow, L Tomlinson, D Herbert, R Box, T Hatton, S Mansfield, S Chapman); The Newcastle upon Tyne Hospitals NHS Foundation Trust (A Price, I McVittie, L Shewan, V Murtha); Derby Teaching Hospitals NHS Foundation Trust (A Apoola, Z Connan, L Gregory, K Holding, V Chester, C Gatford); Public Health England, London (V Delpech); i-Base (R Trevelion). Funding: UK CHIC is funded by the UK Medical Research Council. The views expressed in this presentation are those of the researchers and not necessarily those of the Medical Research Council.

  21. www.ukchic.org.uk

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