Late Presentation of HIV / Infected not yet Diagnosed

Project Period

Late Presentation Definition - Background
A common definition of the term "late presenter" is essential if late presentation is to be more effectively dealt with by public health authorities across Europe and elsewhere. Two initiatives, HIV in Europe and the "Late presentation for HIV treatment on Europe" joined efforts in Spring 2009 to identify a common definition of a patient presenting late for care.

Surveillance to identify the exact extent of the problem of late diagnosis of HIV has been complicated because there existed more than 20 different definitions. A common definition will make the problem of late presentation more “visible”, improve surveillance data and comparison between countries, facilitate identification of risk factors in a common way, and serve as a quality control marker for public health policies and academic initiatives promoting earlier diagnosis.

Presentations and Publications
European late presenter working group: Late presentation of HIV infection: A consensus definition, HIV Medicine 2010, Published Online: 17 Jun 2010

Surveillance to identify the exact extent of the number of undiagnosed people living with HIV remains insufficient across Europe. Different estimation approaches exist, using different sources of data, and many countries do not appear to produce any estimates.

A project group led by Andrew Phillips, UCL worked to create a guidance document for countries on data requirements and available methods for estimation of the number of people with HIV. The document outlines all availabl approaches and provides the necessary guidance for using them. It is a first step towards a coordinated European approach.  

Presentations and Publications
HIV in hiding: Methods and data requirements for the estimation of the number of people living with undiagnosed HIV. Working Group on Estimation of HIV Prevalence in Europe, AIDS 2011

Main Partners
Late Presentation of HIV
T. Coenen, Aids Fonds & Soa Aids Nederland, The Netherlands
M. Ellefson, O. Kirk, J. Lundgren, D. Raben, National University Hospital and Univ. of Copenhagen, Copenhagen HIV Programme, Panum Institute, Denmark
N. Dedes, European AIDS Treatment Group, Brussels, Belgium
F. de Wolf, HIV Monitoring Foundation, The Netherlands
J. Gatell, Clinical Institute of Medicine & Dermatology, Hospital Clinic, University of Barcelona, Spain
J. Rockstroh, Medizinischen Universitätsklinik, Innere-Rheuma-Tropen Ambulanz, Germany
D. Costagiola, INSERM, Paris, France
A. Sönnerborg, Department of Infectious Diseases, Karolinska Institutet, Sweden
A. Antinori, E. Girardi, National Institute for Infectious Diseases, ‘‘Lazzaro Spallanzani’’ IRCCS, Italy
M. Johnson, Royal Free Hampstead NHS Trust, UK
A. d´Arminio Monforte, Department of Medicine, San Paolo Hospital, Italy
A. Mocroft, A. Phillips, C. Sabin, University College London Medical School, Royal Free Campus, UK

Infected not yet diagnosed
C. Achibald, P. Yan, Center for Communicable Diseases and Infection Control, Public Health Agency of Canada, Canada
P. Rhodes, Centers for Disease Prevention and Control, USA
M. Salminen, M. van de Laar, European Centre for Disease Prevention and Control, Sweden
J. Stover, Futures Institute, USA
G. Garnett, A. van Sighem, Imperial College London, UK
A. Alioum, D. Commenges, C. Sommen, INSERM U897 Bordeaux, France
D. Costagliola, J. Ndawinz, V. Supervie, INSERM U943 Paris, France
P. Birrell, A. Preasnis, M. Sweeting, MRC Biostatistics Unit, UK
M. Law, H. Wand, D. Wilson, National Centre in HIV Epidemiology and Clinical Research, Australia
P. Ghys,  K. Stanecki, UNAIDS, Switzerland
R. Lodwick, A. Phillips, C. Sabin, University College London, UK
J. Lundgren, University of Copenhagen, Copenhagen, Denmark
M. Donoghoe, WHO Regional Office for Europe, Denmark


Rigshospitalet, University of Copenhagen
CHIP, Department of Infectious Diseases
Section 2100, Finsencentret
Blegdamsvej 9
DK-2100 Copenhagen Ø
Tel: +45 35 45 57 57
Fax: +45 35 45 57 58