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

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

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

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

Distribution of ≥14 years of age in CHIPS 9% Ireland <1% Wales 69% London 19% Rest of England 3% Scotland 0% N. Ireland Total n= 258

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

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

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

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

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

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)

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

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!!!

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