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HIV/AIDS
Cohort profile
AIDS Therapy Evaluation in the Netherlands (ATHENA) national observational HIV cohort: cohort profile
  1. Tamara Sonia Boender1,
  2. Colette Smit1,
  3. Ard van Sighem1,
  4. Daniela Bezemer1,
  5. Catriona J Ester1,
  6. Sima Zaheri1,
  7. Ferdinand W N M Wit1,2,3,
  8. Peter Reiss1,2,3
  9. on behalf of the ATHENA national observational HIV cohort
  1. 1 Stichting HIV Monitoring, Amsterdam, the Netherlands
  2. 2 Department of Global Health, Academic Medical Center of the University of Amsterdam, Amsterdam, the Netherlands
  3. 3 Department of Global Health, Amsterdam Institute for Global Health and Development, Amsterdam, the Netherlands
  1. Correspondence to Dr Tamara Sonia Boender; s.boender{at}amc.uva.nl

Abstract

Purpose In 1998, the AIDS Therapy Evaluation in the Netherlands (ATHENA) national observational HIV cohort was established to demonstrate the lifesaving effectiveness of triple combination antiretroviral therapy, including HIV-protease inhibitors, that had recently been made available for clinical use. Subsequently, the HIV Monitoring Foundation was established by the Dutch Ministry of Health, Welfare and Sport to continue ATHENA as an open cohort in order to continue the registration and monitoring of all HIV-positive people as an integral part of HIV care in all 26 HIV treatment centres in the Netherlands.

Participants To date, a total of 25 036 participants have been enrolled in the cohort, with 263 600 person-years of follow-up. As of 1 January 2017, 19 035 HIV-1-positive participants were known to be in care: 18 824 adults (81% men and 19% women) and 211 children (47% boys and 53% girls). The remaining 6001 participants had either died (46%), were lost to care (29%) or had moved abroad (25%).

Findings to date Today, with over 20 years of follow-up, the ATHENA cohort has provided extensive knowledge on HIV treatment, comorbidities and coinfections and created insight into the transmission dynamics of the HIV epidemic.

Future plans ATHENA continues to enrol and monitor HIV positive people entering HIV care in the Netherlands. Future research will continue to provide tangible input into HIV care and prevention policies in the Netherlands and internationally.

  • HIV & AIDS
  • infectious diseases
  • epidemiology
  • virology
  • public health

This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.

https://doi.org/10.1136/bmjopen-2018-022516

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    Footnotes

    • Contributors TSB wrote the first draft of the manuscript. AvS, CJS, FWNMW and TSB performed the analyses for the key statistics, tables and figures of the cohort. PR provided overall supervision of the cohort profile. All authors contributed to interpreting the data and to the writing and revising of the manuscript.

    • Funding The ATHENA cohort is managed by Stichting HIV Monitoring and supported by a grant from the Dutch Ministry of Health, Welfare and Sport through the Centre for Infectious Disease Control of the National Institute for Public Health and the Environment.

    • Competing interests None declared.

    • Patient consent Not required.

    • Ethics approval At initiation, the cohort was approved by the institutional review board of all participating centres. People entering HIV care receive written material about participation in the ATHENA cohort and are being informed by their treating physician of the purpose of collection of data, after which they can consent verbally or elect to opt-out. Data are pseudonymised before being provided to investigators and may be used for scientific purposes. A designated quality management coordinator safeguards compliance with the European General Data Protection Regulation.

    • Provenance and peer review Not commissioned; externally peer reviewed.

    • Data sharing statement HIV physicians can review the data of their own treatment centre and compare these data with the full cohort through an online report builder. Statistical information or data for own research purposes can be requested by submitting a research proposal (https://www.hiv-monitoring.nl/english/research/research-projects/). For correspondence: hiv.monitoring@amc.uva.nl.

    • Collaborators CLINICAL CENTRES * denotes site coordinating physician Amsterdam UMC, AMC site, Amsterdam: HIV treating physicians: M. van der Valk * , S.E. Geerlings, M.H. Godfried, A.Goorhuis, J.W. Hovius, T.W. Kuijpers, F.J.B. Nellen, D. Pajkrt, T. van derPoll, J.M. Prins, P. Reiss, H.J.Scherpbier, M. van Vugt, W.J. Wiersinga, F.W.M.N. Wit. HIV nurse consultants: M. van Duinen, J. van Eden, A.M.H. van Hes, F.J.J. Pijnappel , A.M. Weijsenfeld. HIV clinical virologists/chemists: S. Jurriaans,N.K.T. Back, H.L. Zaaijer, B. Berkhout, M.T.E. Cornelissen, C.J. Schinkel, K.C.Wolthers. Amsterdam UMC, VUmc site, Amsterdam: HIV treating physicians: E.J.G. Peters*, M.A. van Agtmael,M. Bomers. HIV nurse consultants: M. Heitmuller, L.M. Laan. HIV clinical virologists/chemists: C.W. Ang, R. van Houdt, A.M. Pettersson, C.M.J.E.Vandenbroucke-Grauls. Emma Kinderziekenhuis (AmsterdamUMC): HIV nurse consultants: C. de Boer, A. van der Plas, A.M.Weijsenfeld. Admiraal De Ruyter Ziekenhuis, Goes: HIV treating physicians: M. van den Berge, A. Stegeman. HIV nurse consultants: S. Baas, L. Hage de Looff. HIV clinical virologists/chemists: B Wintermans, J Veenemans . Catharina Ziekenhuis,Eindhoven: HIV treating physicians: M.J.H. Pronk*, H.S.M. Ammerlaan. HIV nurse consultants: E.S. de Munnik. HIV clinicalvirologists/chemists: A.R. Jansz, J. Tjhie, M.C.A. Wegdam, B. Deiman, V. Scharnhorst. DC Klinieken Lairesse - Hiv Focus Centrum: HIV treating physicians: A. van Eeden*, M. van der Valk. HIV nurse consultants: W. Brokking, M. Groot, L.J.M. Elsenburg. HIV clinical virologists/chemists: M.Damen, I.S. Kwa. ETZ(Elisabeth-TweeSteden Ziekenhuis), Tilburg: HIV treating physicians: M.E.E. van Kasteren*, A.E. Brouwer. HIV nurse consultants: R. van Erve, B.A.F.M. de Kruijf-van de Wiel, S.Keelan-Pfaf, B. van de Ven. Data collection: B.A.F.M. de Kruijf-van de Wiel, B. van der Ven. HIV clinical virologists/chemists: A.G.M. Buiting, P.J. Kabel, D.Versteeg. Erasmus MC, Rotterdam: HIV treating physicians: M.E. van der Ende*, H.I. Bax, E.C.M. van Gorp, J.L. Nouwen,B.J.A. Rijnders, C.A.M. Schurink, A. Verbon, T.E.M.S. de Vries-Sluijs, N.C. deJong-Peltenburg. HIV nurse consultants: N. Bassant, J.E.A. van Beek, M.Vriesde, L.M. van Zonneveld. Data collection: H.J. van den Berg-Cameron, J. deGroot, M. de Zeeuw-de Man. HIV clinicalvirologists/chemists: C.A.B. Boucher, M.P.G Koopmans, J.J.A van Kampen, S.D.Pas. Erasmus MC–Sophia, Rotterdam: HIV treating physicians: P.L.A. Fraaij, A.M.C. van Rossum, C.L. Vermont . HIV nurse consultants: L.C. van der Knaap, E. Visser. Flevoziekenhuis, Almere: HIV treating physicians: J. Branger*, R.A. Douma. HIV nurse consultant: C.J.H.M. Duijf-van de Ven. HagaZiekenhuis, Den Haag: HIV treating physicians: E.F. Schippers*, C. van Nieuwkoop. HIV nurse consultants: J.M. van IJperen, J. Geilings. Datacollection: G. van der Hut. HIV clinicalvirologist/chemist: N.D. van Burgel. HMC (Haaglanden Medisch Centrum), Den Haag: HIV treating physicians: E.M.S. Leyten*, L.B.S. Gelinck. HIV nurse consultants: S. Davids-Veldhuis, A.Y. van Hartingsveld, C. Meerkerk, G.S. Wildenbeest. HIV clinicalvirologists/chemists: E. Heikens . Isala, Zwolle: HIV treating physicians: P.H.P. Groeneveld*, J.W. Bouwhuis, A.J.J.Lammers . HIV nurseconsultants: S. Kraan, A.G.W. van Hulzen, M.S.M. Kruiper . Datacollection: G.L. van der Bliek, P.C.J. Bor. HIV clinicalvirologists/chemists: P. Bloembergen, M.J.H.M. Wolfhagen, G.J.H.M. Ruijs. Leids Universitair Medisch Centrum, Leiden: HIV treating physicians: F.P. Kroon*, M.G.J. de Boer, H. Scheper, H. Jolink. HIV nurse consultants: W. Dorama, N. van Holten. HIV clinical virologists/chemists: E.C.J. Claas,E. Wessels. Maasstad Ziekenhuis, Rotterdam: HIV treating physicians: J.G. den Hollander*, K. Pogany, A.Roukens. HIV nurse consultants: M. Kastelijns, J.V. Smit, E. Smit, D.Struik-Kalkman, C. Tearno. Data collection: T. van Niekerk. HIV clinicalvirologists/chemists: O. Pontesilli. Maastricht UMC+, Maastricht: HIV treating physicians: S.H. Lowe*, A.M.L. Oude Lashof, D. Posthouwer. HIV nurse consultants: R.P. Ackens, K. Burgers, J.Schippers. Data collection: B. Weijenberg-Maes. HIV clinical virologists/chemists: I.H.M. van Loo, T.R.A. Havenith. MC Slotervaart, Amsterdam: HIV treating physicians: J.W. Mulder*, S.M.E. Vrouenraets, F.N. Lauw. HIV nurse consultants: M.C. van Broekhuizen, D.J.Vlasblom. HIV clinical virologists/chemists: P.H.M. Smits. MC Zuiderzee, Lelystad: HIV treating physicians: S. Weijer*, R. El Moussaoui. HIV nurse consultant: A.S. Bosma. Medisch Centrum Leeuwarden, Leeuwarden: HIV treating physicians: M.G.A.van Vonderen*, L.M. Kampschreur. HIV nurse consultants: K. Dijkstra, S. Faber. HIV clinical virologists/chemists: J Weel. Medisch Spectrum Twente, Enschede: HIV treatingphysicians: G.J. Kootstra*, C.E. Delsing. HIV nurse consultants: M. van derBurg-van de Plas, H. Heins. Noordwest Ziekenhuisgroep, Alkmaar: HIV treating physicians: W. Kortmann*, G. van Twillert*, R.Renckens . HIV nurse consultant anddata collection: D. Ruiter-Pronk, F.A. vanTruijen-Oud. HIV clinicalvirologists/chemists: J.W.T. Cohen Stuart, E.P. IJzerman, R. Jansen, W. Rozemeijer W. A. van der Reijden. OLVG, Amsterdam: HIV treating physicians: K. Brinkman*, G.E.L. van den Berk, W.L. Blok, P.H.J. Frissen, K.D.Lettinga W.E.M. Schouten, J. Veenstra. HIV nurse consultants: C.J. Brouwer, G.F. Geerders, K. Hoeksema, M.J. Kleene, I.B. vander Meché, M. Spelbrink, A.J.M. Toonen, S. Wijnands. HIV clinical virologists: D. Kwa . Data collection: R. Regez (coordinator). Radboudumc, Nijmegen: HIV treating physicians: R. van Crevel*, M.Keuter, A.J.A.M. van der Ven, H.J.M. ter Hofstede, A.S.M. Dofferhoff, S.S.V.Henriet, M. van de Flier, K. van Aerde, J. Hoogerwerf. HIV nurse consultants: M. Albers, K.J.T.Grintjes-Huisman, M. de Haan, M. Marneef, R. Strik-Albers. HIV clinical virologists/chemists: J. Rahamat-Langendoen, F.F. Stelma . HIV clinical pharmacology consultant: D.Burger. Rijnstate, Arnhem: HIV treating physicians: E.H. Gisolf*, R.J. Hassing, M.Claassen. HIV nurse consultants: G. ter Beest, P.H.M. van Bentum, N.Langebeek. HIV clinical virologists/chemists: R. Tiemessen, C.M.A. Swanink. Spaarne Gasthuis, Haarlem: HIV treating physicians: S.F.L. van Lelyveld*, R. Soetekouw. HIV nurse consultants: L.M.M. van der Prijt, J. van der Swaluw. Data collection: N. Bermon. HIV clinical virologists/chemists: W.A. van der Reijden, R. Jansen, B.L. Herpers, D.Veenendaal. Medisch Centrum Janvan Goyen, Amsterdam: HIV treating physicians: D.W.M. Verhagen. HIV nurse consultants: M. van Wijk. Universitair Medisch Centrum Groningen, Groningen: HIV treating physicians: W.F.W. Bierman*, M. Bakker, J. Kleinnijenhuis, E.Kloeze, E.H. Scholvinck, Y.Stienstra, C.L. Vermont, K.R. Wilting, M. Wouthuyzen-Bakker. HIV nurse consultants: A. Boonstra, H. de Groot-de Jonge, P.A. van der Meulen, D.A. de Weerd. HIV clinical virologists/chemists: H.G.M. Niesters, C.C. van Leer-Buter, M. Knoester. Universitair Medisch Centrum Utrecht, Utrecht: HIV treating physicians: A.I.M. Hoepelman*, J.E. Arends, R.E.Barth, A.H.W.Bruns, P.M. Ellerbroek, T. Mudrikova, J.J. Oosterheert, E.M. Schadd, M.W.M. Wassenberg, M.A.D. van Zoelen . HIV nurse consultants: K. Aarsman, D.H.M. van Elst-Laurijssen, I. de Kroon, C.S.A.M. van Rooijen. Data collection: M. van Berkel, C.S.A.M. van Rooijen. HIV clinical virologists/chemists: R. Schuurman, F. Verduyn-Lunel, A.M.J. Wensing. Wilhelmina Kinderziekenhuis, UMC Utrecht,Utrecht: HIV treating physicians: L.J. Bont, S.P.M. Geelen, T.F.W.Wolfs. HIV nurse consultants: N. Nauta. COORDINATING CENTRE Director: P Reiss. Deputy director: S Zaheri. Data analysis: D O Bezemer, A I van Sighem, C Smit, F W M N Wit and T S Boender. Data management and quality control: M Hillebregt, A de Jong and T Woudstra. Data monitoring: D Bergsma, S Grivell, R Meijering, M Raethke and T Rutkens. Data collection: L de Groot, M van den Akker, Y Bakker, M Bezemer, E Claessen, A El Berkaoui, J Geerlinks, J Koops, E Kruijne, C Lodewijk, E Lucas, R van der Meer, L Munjishvili, F Paling, B Peeck, C Ree, R Regtop, Y Ruijs, M Schoorl, E Tuijn, L Veenenberg, S van der Vliet, A Wisse and E C Witte. Patient registration: B Tuk.