MEMBERS SCIENTIFIC COMMITTEE Dr. Eveline Bleiker, group leader, Psychosocial Research and Epidemiology & Family Cancer Clinic,
[email protected]
Drs. Chantal Lammens, psychologist, researcher, PhD Student, Division of Psychosocial Research and Epidemiology
[email protected]
Drs. Daniela Hahn, psycholoog-sexuoloog, Department of Psychosocial Counseling,
[email protected]
Dr. Senno Verhoef, head of the Family Cancer Clinic,
[email protected] Anja van Rens, genetic nurse, Family Cancer Clinic,
[email protected] all working in Nederlands Kanker Instituut- Antoni van Leeuwenhoek Ziekenhuis, Department of Psychosocial Research and Epidemiology & Family Cancer Clinic, Plesmanlaan 121, 1066 CX Amsterdam
Prof.dr. Aad Tibben, professor of Psychology in Medical Genetics, department of Medical Genetics, Leids Universitair Medisch Center,
[email protected]
Dr. Kirsten Douma, psychologist, researcher, Afdeling Medische psychologie AMC,
[email protected]
BLEIKER Professional address:
Division of Psychosocial Research and Epidemiology, The Netherlands Cancer Institute, Plesmanlaan 121, 1066 CX Amsterdam Tel.: 020-512.6072 e-mail:
[email protected]
Education and qualifications 2005 1995
1990 1985
Registration as Health Care Psychologist [GZ-Psycholoog, BIG register] (Governmental Registry) PhD dissertation: Personality factors and breast cancer, VU Medical Center, Amsterdam (supervisors: Prof. dr. HM van der Ploeg, VU Medical Center, Amsterdam, Prof. dr. JWH Leer, Leiden University Medical Center) M.Sc., degree in Psychology, main subject: clinical and health psychology, University of Leiden Final examination secondary school (VWO), Rotterdam
Employment history 2008 – present 2003 - 2008 1999 - 2000
1997 - 2003 1995 - 1997
1994 - 1995 1990 - 1994 1990
Group Leader/ Associate Professor, Department of Psychosocial Research and Epidemiology, NKI Postdoctoral Research Associate, Initiator of research line, Department of Psychosocial Research and Epidemiology, NKI Clinical work at Department of Psychiatry of the Leiden University Medical Center (LUMC): psychosocial intakes, diagnostics, relaxation therapy, and cognitive behavioral therapy (supervisor: Dr. YR van Rood) Postdoctoral Research Associate, Department of Psychosocial Research and Epidemiology, NKI Postdoctoral KWF-Fellow at: VU Medical Center, Amsterdam; Memorial Sloan Kettering Cancer Center, New York, USA; Department of Psychosocial Research and Epidemiology, NKI Researcher, Department of Medical Psychology, VU Medical Center, Amsterdam PhD Student at University of Leiden and VU Medical Center, Amsterdam Clinical work at St. Paul's Hospital, Vancouver, Canada, Department Palliative Care (AIDS) (supervisor: Dr. J Montaner) and Department of Psychiatry (supervisor: Dr. L Pullmer)
Award 2003
Clinical Cancer Research Award, by the Dutch Cancer Society (NKI 2003-2977). Aim of this 6-year personalized funding is to develop a research line, and to apply for funding for several projects in this field of research. GRANTS OBTAINED (MAJOR CONTRIBUTION IN WRITING) 2008 – 2009 2008 – 2012 2008 – 2011 2005 – 2009
At risk for pancreatic cancer: uptake of, and experiences with, surveillance (Dutch Gastr. Res.Foundation 2008-2009) Identification of psychosocial problems and perceived need for support in cancer genetics (Dutch Cancer Society: NKI 2008-4016) Behavioral and psychosocial effects of rapid genetic counseling and testing in newly diagnosed breast cancer patients; a multicenter study (Nuts Ohra Foundation) Psychosocial aspects of genetic testing in families at high risk of multiple tumors at various sites and ages (Dutch Cancer Society: NKI 2005-3209)
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2004 – 2008 2001 – 2006
2000 – 2002 1998 – 2002 1998 – 2001 1998 – 2003
Long-term psychosocial impact of genetic testing among Familial Adenomatous Polyposis (FAP) families (Dutch Cancer Society: NKI 2004-2987) The impact of prophylactic oophorectomy in women from hereditary breast/ovarian cancer families on psychosocial health and symptom experience (Dutch Cancer Society: NKI 2001-2383) Psychosocial consequences of prevention of ovarian cancer (NKI-AVL seed money) Quality of Care at the family cancer clinic (Stichting Klinische Genetica Amsterdam: SKGA) Screening behavior of families at high risk for developing colorectal cancer (NKI-AVL seed money) The psychological and behavioral impact of genetic counseling for colorectal cancer: a prospective multicenter study (Dutch Cancer Society: KWF 98-1858)
Meetings organized 2009 2007 2006 2005 2005 2004 2003
Conference of the International Society on Psychosocial Aspects of Genetic Testing for Hereditary Cancer, Toronto, Canada (International Scientific Committee member) Conference of the International Society on Psychosocial Aspects of Genetic Testing for Hereditary Cancer, Manchester, UK (International Scientific Committee member) th 8 World Congress of Psycho-Oncology, Venice, Italy (International Scientific Committee member) Conference of the International Society on Psychosocial Aspects of Genetic Testing for Hereditary Cancer, Philadelphia, USA, (International Scientific Committee member) Conference of the Dutch Society for Psychosocial Oncology (NVPO) (chair) Conference of the Dutch Society for Psychosocial Oncology (NVPO) (vice chair) Conference of the Dutch Society for Psychosocial Oncology (NVPO) (member)
Selected papers Lammens CRM, Verhoef S, Aaronson NK, Wagner A, Sijmons RH, Ausems MGEM, Vriends AHJT, Ruijs MWG, Os TAM van, Spruijt L, Gómez García EB, Kluijt I, Nagtegaal T & Bleiker EMA. Genetic testing in Li-Fraumeni Syndrome: Uptake and psychosocial consequences. Journal of Clinical Oncology 2010 (in press). Douma KFL, Bleiker EMA, Vasen HFA, Gundy CM, Gerritsma MA, Aaronson NK. Psychological distress and quality of life of partners of individuals with familial adenomatous polyposis. Psycho-Oncology 2010 (in press). Bleiker EMA, Hendriks JHCL, Otten JDM, Verbeek ALM, Ploeg HM van der. Personality factors and breast cancer risk: a 13-year follow-up. Journal of the National Cancer Institute 2008; 100: 213218.
LAMMENS Functie: Promovendus, Afdeling Psychosociaal Onderzoek & Epidemiologie, NKI-AVL te Amsterdam. Opleiding: Masters degree Klinische Psychologie, Universiteit van Amsterdam Werkervaring November 2005-heden Promovendus nationaal multi centre promotieonderzoek naar de ‘Psychosocial aspects of genetic testing in families at high risk of developing multiple tumors at various sites and ages”, aan het NKI-AVL te Amsterdam. April-september 2005 Wetenschappelijk medewerker bij het project: ‘Person related outcomes of familial adenomateus polyposis’, aan het NKI-AVL te Amsterdam en bij de Stichting Opsporing Erfelijke Tumoren (STOET) te Leiden.
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Professionele activiteiten -
2005-heden actief lid landelijke werkgroep Familiaire Tumoren van de Nederlandse Vereniging voor Psychosociale Oncologie (NVPO) 2006-2010 webmaster NVPO website 2006-heden redactielid tijdschrift ‘Psychosociale Oncologie’ 2007-heden secretaris werkgroep PR & Fondsenwerving NVPO 2008-heden bestuurslid NVPO
3 publicaties Lammens C, Bleiker E, Aaronson N, Vriends A, Ausems M, Jansweijer M, Wagner A, Sijmons R, van den Ouweland A, van der Luijt R, Spruijt L, Gomez Garcia E, Ruijs M, Verhoef S. Attitude towards pre-implantation genetic diagnosis for hereditary cancer. Fam Cancer 2009; 8 (4): 457-64. Lammens C, Bleiker E, Verhoef S, Hes F, Ausems M, Majoor-Krakauer D, Sijmons R, van der Luijt R, van den Ouweland A, van Os T, Hoogerbrugge N, Gomez-Garcia E, Dommering D, Gundy C, Aaronson N. Psychosocial impact of Von Hippel-Lindau disease: levels and sources of distress. Clinical Genetics 2010; online ahead of print. Lammens C, Aaronson N, Wagner A, Sijmons R, Ausems M, Vriends A, Ruijs M, van Os T, Spruijt L, GomezGarcia E, Kluijt I, Nagtegaal T, Verhoef S, Bleiker E. Genetic testing in Li-Fraumeni Syndrome; uptake and psychosocial consequences. Journal of Clinical Oncology 2010; in press.
HAHN Position: Psychologist-Sexologist , Department of Psychosocial Oncology , The Netherlands Cancer Institute Training: Social Sciences, Goethe University Frankfurt, (D) 1974-1978. Health Psychology, University of Amsterdam, 1979 – 1986 General health care, epidemiology & hospital management, University of Utrecht 1984-1985 Sexology, University of Amsterdam 1987-1989 PhD student, University of Amsterdam 1987-1992 Registration health psychologist 1999 Registration sexologist 2000, reregistered 2005 Registration ‘health psychologist first line’ 2006 Professional experience 1987 – 1992: PhD student University of Amsterdam 1991 – 1993: lecturer Health Psychology University of Amsterdam 1992 – 1997: applied researcher University of Amsterdam 1993 – 1999: Head Social Medical Department, The Netherlands Cancer Institute 1999 – present: psychologist-sexologist Depart. of Psychosocial Service and Support/ Family Cancer Clinic 2008 - lecturer course sexuality and breast cancer, national education course for nurses specializing in the care for the berast cancer patient. 1999 – present: private practice psychologist-sexologist in Health Care Center Hilversum 3 publications 1 Menko FH, Ligtenberg MJL, Brouwer T, Hahn DEE, Ausems MG. DNA diagnostiek naar erfelijke aanleg voor tumoren. Ned. Tijdschr Geneesk. 2007; 15 (5): 295-298. 2.
Bleiker EMA, Hahn DEE, Smets, EMA. Familiaire Tumoren. In: JCJM de Haes, LM Gualthérie van Weezel, R Sanderman, HBM van de Wiel (Ed.): Psychologische patiëntenzorg in de oncologie. Van Gorcum Uitgeverij, 2009: 89-106.
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3.
Bleiker EMA, Hahn DEE. Beslissen bij erfelijkheidsonderzoek voor kanker: kansen en keuzen. De Psycholoog, 2008; 43, 12-19.
Awards: 2001
2009
NVPO Award for work in the field of psychosocial aspects of hereditary Cancer Excellence in Patient Education Award 2009 European Oncology Nursing Society
VERHOEF training: Specialty Training: 1992-1998 Clinical Genetics. Erasmus Medical Center Rotterdam: 01-09-1998 Registration as Clinical Geneticist Thesis 2001 Clinical and Molecular Genetics of Tuberous Sclerosis Complex, Medical Faculty, Erasmus University Rotterdam professional experience Employments: 1998 – present Staff member Family Cancer Clinic, The Netherlands Cancer Institute, Amsterdam 1998 – present Staff member Department of Clinical Genetics Amsterdam Medical Center (AMC) 2003-present. Head of the Family Cancer Clinic, Netherlands Cancer Institute, Amsterdam 3 publicaties Lammens CRM, Verhoef S, Aaronson NK, Wagner A, Sijmons RH, Ausems MGEM, Vriends AHJT, Ruijs MWG, Os TAM van, Spruijt L, Gómez García EB, Kluijt I, Nagtegaal T & Bleiker EMA. Genetic testing in LiFraumeni Syndrome: Uptake and psychosocial consequences. JCO 2010 (in press). Douma KFL, Aaronson NK, Vasen HF, Verhoef S, Gundy CM, Bleiker EMA. Attitudes towards genetic testing in childhood and reproductive decision-making for familial adenomatous polyposis (FAP). European Journal of Human Genetics 2010 (In Press). Lammens C, Bleiker E, Aaronson N, Vriends A, Ausems M, Janswijer M, Wagner A, Sijmons R, Ouweland A van den, Luijt R van der, Spruijt L, Gomez Garcia E, Ruijs M, Verhoef S. Attitude toward pre-implantation genetic diagnosis for hereditary cancer. Familial Cancer 2009; DOI 10.1007/s10689-009-9265-5
RENS OPLEIDINGEN 1980-1984 1993-1995 2000-2002 CURSUSSEN 1985-1987 1989-1991
WERKERVARING 1996heden
Opleiding Verpleegkunde A Catharina Ziekenhuis Docenten opleiding 2e graads verpleegkunde Hoge school Holland Genetisch consulent, AMC
Plaats Eindhoven Amsterdam
Cursus Specialisatie oncologie verpleegkunde, NKI/AvL Specialisatie hematologie verpleegkunde Universitair Medisch Centrum Leiden
Plaats Amsterdam Leiden
Werkgever 1 Nederlands Kanker Instituut/Antoni van Leeuwenhoek ziekenhuis
Amsterdam
Plaats Amsterdam
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Afdeling Functie: Werkzaamheden:
Voltijd/deeltijd: Adres: Postcode: Telefoon: Referenties:
1991-1995
Werkgever 2 Nederlands Kanker Instituut/ Antoni van Leeuwenhoek ziekenhuis Functie: Werkzaamheden: Voltijd/deeltijd: Adres: Postcode: Telefoon: Referenties:
1987-1991
Polikliniek Familiaire Tumoren Genetisch consulent Intake adviesvragers, stamboom onderzoek, voorlichting erfelijkheidsonderzoek 80% Plesmanlaan 121 1066 CX Amsterdam 020-5127831
Verpleegkundige 80% Plesmanlaan 121 1066 CX Amsterdam 020-5127831
Werkgever 3 Academisch Medisch Centrum Functie: Werkzaamheden: Voltijd/deeltijd: Adres: Postcode: Telefoon: Referenties:
Amsterdam
Amsterdam
Verpleegkundige afdeling oncologie en AIDS 80% Meibergdreef 9 1105 AZ Amsterdam 020-5669111
TIBBEN Education 1989-1993
1969-1976 Employment 1977-1989 1989-1993 1993-2001 1999-2009 2009-present
PhD cum laude (31 March 1993); thesis: What is knowledge but grieving? On psychological effects of presymptomatic DNA-testing for Huntington’s disease; Erasmus Universiteit Rotterdam Vrije Universiteit Amsterdam, Clinical Psychology
clinical psychologist Psychiatric Hospital Overduin, Katwijk aan Zee psychologist-researcher Erasmus University Rotterdam, dept Medical Psychology clinical psychologist dept Clinical Genetics, Erasmus Medical Centre, Rotterdam professor Leiden University Medical Centre; special chair on Huntington’s disease professor Leiden University Medical Centre, chair: Psychology of Clinical Genetics
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Selected Committees and Board Memberships 1997-1999 member of the Dutch Health Counsel Committee DNA-diagnostics 1999-2003 deputy member of the Central Committee on Research Involving Human Subjects (CCMO). 2001-present member of the European CRISCOM/INCRISC working group (Cancer Risk Communication) 2003-2006 member of the Core Group of the Centre of Society and Genomics 2004-present Member Scientific Committee International Meeting on Psychosocial Aspects of Genetic Testing for Hereditary Cancer 2006-present Member of the Scientific Council for Social Oncology of the Dutch Cancer Society 2006-present Member Scientific Programme Committee EMPAG (European (biannual) Meeting on Psychosocial Aspects of Genetics) 2007-present member of the GENOMEL international melanoma consortium 2008-present member editorial board Hereditary Cancer in Clinical Practice 2009-present member of the Scientific Council of the Dutch Cancer Society (KWF). 2009-present Vice chair of the Scientific Council for Social Oncology of the Dutch Cancer Society 2010-present Section editor Social and Behavioral Research of Clinical Genetics 2010-present Vice chair Scientific Counsel Alp D’Huzes Foundation 3 publicaties 1. Damen THC, Timman R, Kunst EH, Gopie JP, Bresser PJC, Seynaeve C, Menke-Pluijmers MB, Mureau MA, Hofer SOP, Tibben A. High Satisfaction Rates in Women after DIEP Flap Breast Reconstruction. J Plast Reconstr Aesthet Surg. 2010 Jan;63(1):93-100. 2. Dijk S van, Otten W, Asperen C van, Tollenaar R, Tibben A. Putting it all behind: Long-term psychological impact of an inconclusive DNA-test result for breast cancer. Genet Med. 2008 Oct;10(10):745-50. 3. Vos J, Otten W, Asperen AC van, Jansen A, Menko F, Tibben A. The counsellees’view of an Unclassified Variant in BRCA1/2: interpretation, understanding and impact. PsychoOncology 2008; 17(8):822-30
DOUMA Opleidingen 1997 – 2003: 1991-1997: Werkervaring 2-2010 tot heden:
8-2009 tot 4-2009:
11-2004 tot 8-2009:
Psychologie Universiteit van Amsterdam Atheneum Purmerendse Scholengemeenschap, locatie Da Vinci, te Purmerend Postdoc Academisch Medisch Centrum Project: de kankerpatiënt die volledig geinformeerd wil worden en patiëntgericht informatie geven: een prospectief onderzoek. Coördinator Polyposis Contactgroep Stichting Polyposis Contactgroep Met behulp van een subsidie van fonds PGO van het ministerie van VWS vervulde ik een brugfunctie tussen enerzijds de patiëntenvereniging en anderzijds professionals. Daarnaast hielp ik de stichting bij professionalisering. Promovendus Het Nederlands Kanker Instituut - Antoni van Leeuwenhoek Ziekenhuis Binnen de afdeling Psychosociaal Onderzoek en Epidemiologie ben ik werkzaam geweest als promovendus op het project: Psychosociale gevolgen van familiaire adenomateuze polyposis (FAP) in families.
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11-2003 tot 7-2004:
9-2003 tot 11-2003: 6-2003 tot 08-2003:
Wetenschappelijk medewerker Het Nederlands Kanker Instituut - Antoni van Leeuwenhoek Ziekenhuis Ik ben werkzaam geweest als wetenschappelijk medewerker bij het project ‘Constructive Technology Assessment’ waarbij ik de implementatie van microarray prognostiek bij borstkanker heb begeleid en geëvalueerd. Onderzoeksassistent Het Nederlands Kanker Instituut - Antoni van Leeuwenhoek Ziekenhuis Medewerker wetenschappelijk onderzoek Afdeling Diëtetiek - Het Nederlands Kanker Instituut - Antoni van Leeuwenhoek Ziekenhuis
Cursussen Tijdens promotietraject (2004-heden): - Persoonlijke effectiviteit - Writing and presenting in Biomedicine - Writing Scientific English for Publication - Multilevel analyse - Klinimetrie: het ontwikkelen en evalueren van meetinstrumenten - Auteurscursus van het Nederlands Tijdschrift voor Geneeskunde
Professionele activiteiten 1-2007 tot heden: webmaster van de website van de NVPO, en sinds januari 2009 voorzitter van de groep webmasters. Voornaamste taken zijn het verzorgen van een tweemaandelijkse digitale nieuwsbrief, het plaatsen van stukken op de website en het meebepalen van het toekomstige beleid van de website 6-2007 tot 6-2009: secretaris van de werkgroep Familiaire Tumoren van de Nederlandse Vereniging voor Psychosociale Oncologie (NVPO) 1-2007 tot heden: op verzoek beoordelen van artikelen voor internationale wetenschappelijke tijdschriften zoals Psycho-Oncology, Familial Cancer, Oncology en het Journal of Genetic Counseling 11-2005 tot 5-2009: lid van de raad van onderzoekers in opleiding (OIO-raad) van het Nederlands Kanker Instituut - Antoni van Leeuwenhoek Ziekenhuis 3 publicaties Douma, K.F.L., Aaronson, N.K., Vasen, H.F.A., Verhoef S., Gundy C.M., Bleiker E.M.A., Attitudes towards genetic testing in childhood and reproductive decision-making for familial adenomatous polyposis (FAP). European Journal of Human Genetics. 2009. DOI: 10.1038/ejhg.2009.151 Douma, K.F.L., Bleiker, E.M.A., Aaronson, N.K., Cats, A., Gerritsma, M.A., Gundy C.M., Vasen. H.F.A. Long-term compliance with endoscopic surveillance advice for familial adenomatous polyposis (FAP). Colorectal Disease. 2009. DOI: 10.1111/j.1463-1318.2009.02008. Douma K.F.L., Aaronson, N.K., Vasen, H.F.A., Gerritsma, M.A., Gundy, C.M., Janssen, E.P.A., Vriends, A.H.J.T., Cats, A., Verhoef, S., Bleiker, E.M.A. Psychological distress and use of psychosocial support in familial adenomatous polyposis. Psycho-Oncology. 2009 April 20. DOI:10.1002/pon.1570
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