1. Katja Doerholt on behalf of CHIPS NSHPC HYPNET CHIC
Adolescents in CHIPS
- linking to CHIC
Young Persons (YP) leaving CHIPS are lost to follow up - What to do next?
Katja Doerholt on behalf of CHIPS NSHPC HYPNET CHIC

2. Introduction to CHIPS & NSHPC
Surveillance of obstetric and paediatric HIV in the UK and Ireland through the National Study of HIV in Pregnancy and Childhood (NSHPC)
CHIPS is a multicentre cohort study of HIV infected children under care in 56 hospitals in the UK & Ireland
85% children currently reported to the NSHPC are also in CHIPS follow up
Prospective data collected annually
Clinical progression, VL, CD4, growth, LDS, ART, side effects
For those not in CHIPS, NSHPC collects limited annual follow up data
As a lot of you will know as you are filling in the form for chips, we have a detailed annual follow up questionnaire including height weight, VL CD4 etc

3. Introduction to the UK Collaborative HIV Cohort Study (UK CHIC)
Collaboration of HIV clinics in the UK
Most London centres, excluding St. Thomas, St. George‘s & Newham
Outside London centres are Brighton & Edinburgh
Aims
To monitor changes in deaths and AIDS over time
Uptake & response to HAART
Laboratory toxicity data
CHIC collect data annually. The merge & transfer onto CHIC database takes approx 9 months. On the CHIC database there are currently 85 children.
35 (approx 40%) are linked up from CHIPS – linked by DOB, initials or last clinic seen. (From the 35 – 32 are in CHIC centres & 3 are not.)
49 are not matched – not seen in CHIC centres
The problem remains that its hard to follow patients who are moving around the country as they grow up, i.e. travelling abroad, going to university/college. SC mentioned that there has been some duplication of cases in CHIC.
CHIC collects and merges specific demographic, clinical and laboratory data items from the centres
These are the current centres I think:
Whittington Brighton UCL/MMC Royal London St Mary’s King’s C+W Royal Free Barts Homerton North Middlesex Edinburgh

4. Leaving Paediatric Care CHIPS
Age group by year of follow up
Katherine sent me data on
Those who left 55 as above stayed in same hopsital, but that is obviously
Not poss for those in children‘s hospital as GOS so additionally 16 moved to
Mortimer market, but still the question for how long stays I guess

5. Distribution of ≥14 years of age in CHIPS9%
Ireland
<1%
Wales
69%
London
19%
Rest of England
3% Scotland 0%
N. Ireland
Total n= 258

6. Leaving Paediatric Care
1,043 children/YP in current CHIPS follow up
50% of the cohort ≥10 years
258 (25%) are ≥ 14 years
114 have already been transferred to adult care since the start of CHIPS
55 (48%) stayed at the same adult centre

7. Linking CHIPS CHIC
114 YP transfered from CHIPS to adult care of which only 40% in current CHIC follows up
BUT! around 60% of YP are not matched and lost to follow up
CHIC data are more limited
no growth, no clinical LDS or clinical adverse event data available
Additional problem
Mobile population, YP move around the country as they grow up, i.e. travelling abroad, going to university/college

8. Teenagers with late presentation of vertically-acquired HIV infection in UK
Rashida Ferrand, Katia Prime, Caroline Foster, Eva Jungman
CHIPS/NSHPC and HPA data
Describe 38 YP diagnosed ≥13 years
30% developed AIDS
60% required ART shortly after diagnosis
Delay in diagnosis
What impact has this on clinical outcome
STI and ongoing transmission
NEED for AWARENESS of LATE PRESENTATION

9. YP cohorts Up and running projects
Swiss and Dutch YP are followed in the same adult database
BUT small numbers in both countries
US are developing a cohort of vertically infected YP
Very detailed studies on growth, drug related adverse events, aim of enroling 600 HIV+ YP
Mulago Hospital, Uganda
Follow up of YP with an already existing adolescent cohort

10. First „brainstorming“ between CHIPS/NSHPC CHIC HYPNET July 07
Conclusions from the first meeting
To continue follow up of this unique cohort with available clinical and treatment history
Need for rapid action and development of a YP cohort
CHIPS should take the lead

11. Aims of the YP cohort
Evaluate effects of perinatally acquired HIV in YP
Including growth, sexual maturation
Response and use of combination ART
Describe long term complications of HIV and ART including drug toxicity
Hyperlipidaemia and Lypodystrophy, Hyperglycaemia
Cardiovascular events/changes, Hypertension
Effects on bone metabolism (biochemistry, and other locally available data)

12. Aims of the YP cohort
Early talks about collaborations with other similar cohort studies
Africa, Europe and the US
Further collaborations with other non HIV cohort studies to help identify effect of HIV/ART

13. Suggestions, ideas welcome!!!
Next Step
2nd CHIPS/NSHPC CHIC HYPNET meeting
To discuss aims and data collection in more detail
Funding, application for grants etc.
Suggestions, ideas welcome!!!

14. Acknowledgements
Thanks to everyone providing data to the NSHPC and CHIPS !!
Republic of Ireland: Our Lady's Children’s Hospital Crumlin, Dublin: K Butler, A Walsh.
UK: Birmingham Heartlands Hospital, Birmingham: Y Heath, J Sills; Blackpool Victoria Hospital, Blackpool: N Laycock; Bristol Royal Hospital for Children, Bristol: A Finn, A Foot, L Hutchison; Central Middlesex Hospital, London: M Le Provost, A Williams; Chase Farm Hospital, Middlesex; Chelsea and Westminster Hospital, London: D Hamadache, EGH Lyall, P Seery; Ealing Hospital, Middlesex: V Shah, K Sloper; Glasgow Royal Hospital for Sick Children, Glasgow: C Doherty, R Hague; Great Ormond St Hospital for Children, London: M Clapson, S Fasolo, J Flynn, DM Gibb, N Klein, K Moshal, V Novelli, D Shingadia; Hillingdon Hospital, London; Homerton University Hospital, London: D Gurtin; John Radcliffe Hospital, Oxford: A Pollard, S Segal; King's College Hospital, London: C Ball, S Hawkins, D Nayagam; Leeds General Infirmary, Leeds: P Chetcuti; Leicester Royal Infirmary, Leicester: M Green, J Houghton; Luton and Dunstable Hospital, Luton: M Connan, M Eisenhut; Mayday University Hospital, Croydon: J Baverstock, J Handforth; Milton Keynes General Hospital, Milton Keynes: PK Roy; Newcastle General Hospital, Newcastle: J Clarke, K Doerholt, C Waruiru; Newham General Hospital, London: C Donoghue, E Cooper, S Liebeschuetz, S Wong; Ninewells Hospital and Medical School, Dundee: T Lornie; North Manchester General Hospital, Manchester: C Murphy, T Tan; North Middlesex Hospital, London: J Daniels, EGH Lyall, B Sampson-Davis; Northampton General Hospital, Northampton: F Thompson; Northwick Park Hospital, Middlesex; M Le Provost, A Williams; Nottingham City Hospital, Nottingham: D Curnock, A Smyth, M Yanney; Queen Elizabeth Hospital, Woolwich: W Faulknall, S Mitchell; Royal Belfast Hospital for Sick Children, Belfast: S Christie; Royal Edinburgh Hospital for Sick Children, Edinburgh: J Mok; Royal Free Hospital, London: S McKenna, V Van Someren; Royal Liverpool Children’s Hospital, Liverpool: C Benson, A Riordan; Royal London Hospital, London: B Ramaboea, A Riddell; Royal Preston Hospital, Preston: AN Campbell; Sheffield Children's Hospital, Sheffield: J Hobbs, F Shackley; St George's Hospital, London: R Chakraborty, S Donaghy, R Fluke, M Sharland, S Storey, C Wells; St Mary's Hospital, London: D Hamadache, C Hanley, EGH Lyall, G Tudor-Williams, C Walsh, S Walters; St Thomas' Hospital, London: R Cross, G Du Mont, E Menson; University Hospital Lewisham, London: D Scott, J Stroobant; University Hospital of North Staffordshire, Stoke On Trent: P McMaster; University Hospital of Wales, Cardiff: B O' Hare; Wexham Park, Slough: R Jones; Whipps Cross Hospital, London: K Gardiner; Whittington Hospital, London.
Funding:
NSHPC is funded by the Health Protection Agency, and has also received support from the UK Department of Health and the Medical Research Council. CHIPS is funded by the Department of Health and in the past received additional support from Bristol-Myers Squibb, Boehringer Ingelheim, GlaxoSmithKline, Roche, Abbott, and Gilead.
 Committees and participants (in alphabetical order):
CHIPS Steering Committee: K Butler, K Doerholt, S Donaghy, DT Dunn, T Duong, DM Gibb, A Judd, EGH Lyall, J Masters, E Menson, V Novelli, C Peckham, A Riordan, M Sharland, D Shingadia, PA Tookey, G Tudor-Williams, G Wait
MRC Clinical Trials Unit: DT Dunn, T Duong, L Farrelly, DM Gibb, D Johnson, A Judd, G Wait, AS Walker
National Study of HIV in Pregnancy & Childhood, Institute of Child Health: J Masters, C Peckham, PA Tookey