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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 HIVpositive 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.
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.
UK CHIC: Participating clinics
Clinical centres
Clinical centres
Brighton and Sussex University Hospitals NHS Trust
York Teaching Hospital NHS Foundation Trust
Chelsea & Westminster NHS Trust
Coventry, University Hospitals Coventry and Warwickshire NHS
Trust
Mortimer Market Centre,
Central and NW London NHS Foundation Trust
Wolverhampton, The Royal Wolverhampton NHS Trust
Kings College Hospital NHS Trust
Chertsey, Ashford and St Peter’s Hospitals NHS Foundation Trust
Royal Free NHS Trust
Milton Keynes University Hospital NHS Foundation Trust
St Mary’s, Imperial College Healthcare NHS Trust
North Manchester, Pennine Acute Hospitals NHS Trust
Barts and the London NHS Trust
Homerton University Hospital NHS Trust
Edinburgh, The Lothian University Hospitals NHS Trust
North Middlesex University Hospital NHS Trust
Collaborators
North Bristol NHS Trust
Research Dept. of Infection and Population Health, UCL
Leicester, University Hospitals of Leicester NHS Trust
Medical Research Council Clinical Trials Unit at UCL
Middlesbrough, South Tees Hospitals NHS Foundation Trust
Public Health England (formerly HPA-CfI)
Woolwich, South London Healthcare NHS Trust
St George’s Healthcare NHS Trust
Inclusion criteria
Patients:
• aged > 16 years and seen at any of the centres
since 1/1/1996
Clinics:
• electronic data are already available
• able to provide data on an annual basis
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 and principal investigator are based at
UCL (Royal Free campus)
Study management
Steering committee meets every 3-6 months
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
Data protection policy
• Policy drafted by a sub-group with input from experts in
health informatics.
• Data are submitted by secure web-based transfer (FTP), 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.
• Personnel with access to the data are made aware of data
confidentiality requirements.
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
Errors checked
and corrected on
source and
submitted dataset
Data from all centres merged and possible
duplicates identified
Subset of records audited
Final dataset distributed for analysis
Results fed back
to clinics and data
managers
Datasets
HLA-B*5701
Hepatitis
- A/B/C tests
- clinical data
Attendance
Demographics
(patient, centre, ethnicity,
risk group, first and last
attendance)
Antiretroviral
therapy
Adherence
Clinical events
- AIDS
- serious non-AIDS
- death
Prophylaxis (PCP)
CD4
viral loads
(No longer collected)
Laboratory-defined
toxicities
?
future
data items
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
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.
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 (which
include death data from the 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
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.
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 106,000 resistance tests relating to 66,100
patients are stored on the database – 24,700 patients have
linked clinical data in the UK CHIC study (data to end of 2012).
Key findings
Characteristics of cohort
Total number of patients
n
%
54153
100.0
Sex:
Male
Female
39226
14967
72.4
27.6
Risk group:
MSM
IDU
Heterosexual
Other/not known
27023
1764
20422
4944
49.9
3.3
37.7
9.1
Ethnicity:
White
28266
52.2
Black African
15051
27.8
Other
7978
14.7
Not known
2858
5.3
4799
8.8
Deaths
CHIC 2014 dataset
Study outputs
Collaborations
Collaborative HIV
Paediatric Study
(CHIPS)
UK HIV Drug
Resistance
database
TDM Registry
University of
Liverpool
European
COHERE
collaboration
National Study of
HIV in Pregnancy
and Childhood
(NSHPC)
Statistical
research/
methodology
groups
Public Health
England
(surveillance)
Acknowledgements
Steering Committee:
Jonathan Ainsworth, Sris Allan, Jane Anderson, Abdel Babiker, David Chadwick, Valerie Delpech, David Dunn, Martin Fisher, Brian
Gazzard, Richard Gilson, Mark Gompels, Phillip Hay, Teresa Hill, Margaret Johnson, Sophie Jose, Stephen Kegg, Clifford Leen, Fabiola
Martin, Dushyant Mital, Mark Nelson, Chloe Orkin, Adrian Palfreeman, Andrew Phillips, Deenan Pillay, Frank Post, Jillian Pritchard,
Caroline Sabin (PI), Roy Trevelion, Achim Schwenk, Anjum Tariq, John Walsh.
Central Co-ordination: Teresa Hill, Sophie Jose, Andrew Phillips, Caroline Sabin, Alicia Thornton, Susie Huntington (UCL); David Dunn,
Adam Glabay (Medical Research Council Clinical Trials Unit [MRC CTU at UCL]).
Participating sites:
Brighton and Sussex University Hospitals NHS Trust (M Fisher, N Perry, S Tilbury, E Youssef, D Churchill); Chelsea and Westminster
Hospital NHS Foundation Trust, London (B Gazzard, M Nelson, R Everett, D Asboe, S Mandalia); King’s College Hospital NHS
Foundation Trust, London (F Post, A Adefisan, C Taylor, Z Gleisner, F Ibrahim, L Campbell); Mortimer Market Centre, University College
London (R Gilson, N Brima, I Williams); Royal Free NHS Foundation Trust/University College London (M Johnson, M Youle, F Lampe,
C Smith, R Tsintas, C Chaloner, S Hutchinson, C Sabin, A Phillips, T Hill, S Jose, A Thornton, S Huntington); 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, C de Souza); 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 Wilson, S Morris); North Bristol NHS Trust (M Gompels, S Allan); Leicester, University Hospitals of Leicester NHS Trust
(A Palfreeman, K Memon, A Lewszuk); Middlesbrough, South Tees Hospitals NHS Foundation Trust (D Chadwick, K Baillie); Woolwich,
Lewisham and Greenwich NHS Trust (S Kegg, Dr Mitchell, Dr Hunter), St George’s Healthcare NHS Trust (P Hay, M Dhillon); York
Teaching Hospital NHS Foundation Trust (F Martin, S Russell-Sharpe, J Gravely); Coventry, University Hospitals Coventry and
Warwickshire NHS Trust (S Allan, A Harte, S Clay); Wolverhampton, The Royal Wolverhampton Hospitals NHS Trust (A Tariq,
H Spencer, R Jones); 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, V Edgell, J Allen); North Manchester, Pennine Acute Hospitals NHS Trust (A
Ustianowski, C Murphy, I Gunder); Public Health England, London (V Delpech); i-Base (R Trevelion).
Funding:
UK CHIC is funded by the UK Medical Research Council
www.ukchic.org.uk