Newborn screening in Europe Expert Opinion document

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FINAL 28/08/2011Appendix 1: Experts asked to comment during thepreparation of the Expert Opinion Document.CoreMembers of EUNENBS nominated at 31 May 2011FAMILYNAMEFIRSTNAMEAFFILIATIONEU Member StatesAustria Kasper David, C. Medical University of ViennaDepartment of Pediatrics andAdolescent MedicineAustria Hintner Helmut Department of Dermatology, ParacelsusMedical University (PMU) SalzburgBelgium(Flemishcommunity)Belgium (Frenchcommunity)VandenbulckePieterFlemish Agency for Care and HealthFlemish Ministry of Welfare, PublicHealth and FamilyGoyens Philippe Nutrition and Metabolism Unit &Laboratory of Pediatrics, UniversitéLibre de BruxellesBelgium (Frenchcommunity)Meulemans Ann Nutrition and Metabolism Unit &Laboratory of Pediatrics, UniversitéLibre de BruxellesBulgaria Stoeva Iva Specialised Hospital for ActiveCyprusCzech RepublicChristophidouAnastasiadouKožichViolettaViktorTreatment of Children's DiseasesClinical Genetics Clinic, ArchbishopMakarios III Medical Centre, Medicaland Public Health Services, Ministry ofHealthInstitute of Inherited MetabolicDisordersUniversity Hospital KrálovskéVinohradyCzech Republic Macek Milan 2nd Faculty of Medicine, CharlesUniversity Prague and UniversityHospital MotolCzech Republic Votava Felix Dept.of Pediatrics, University HospitalKralovske Vinohrady, PragueDenmark Jespersen Marianne National Board of HealthEstonia Uudelepp Mari-Liis Tartu University Hospital (Center forGenetics)Finland Leipälä Jaana National Institute for Health andWelfareFinnish Office for Health TechnologyAssessmentFrance Sarles Jacques French association of screening andprevention of childhood disability(AFDPHE)46
FINAL 28/08/2011Germany Kulig Michael Abteilung Fachberatung Medizin - JointFederal CommitteeGreece Mengreli Chryssanthi Department of BiochemicalLaboratories of the Institute of ChildHealthHungary Szonyi Laszlo 1st Department of Paediatrics,Semmelweis University - BudapestIreland (andAdvisory Board)Mayne Philip Newborn Bloodspot ScreeningLaboratoryThe Children's University HospitalItaly Dallapiccola Bruno Paediatric Hospital "Bambino Gesù" -IRCCSItaly Cerone Roberto Dept. of Paediatric Sciences "Giovannide Toni", G. Gaslini Institute - GenovaLatvia Kreicberga Ilze Riga Maternity HospitalLithuania Algirdas Utkus Genetics Center, Vilnius UniversityLuxembourg Wagener Yolande Ministry of HealthMalta Scerri Christian A. Specialties Clinic, Outpatients Block,Mater Dei Hospital, Neo-natalPaediatric Intensive Care Unit, MaterDei HospitalMaltaAttardMontaltoSimonSpecialties Clinic, Outpatients Block,Mater Dei Hospital, Neo-natalPaediatric Intensive Care Unit, MaterDei HospitalNetherlands Groeneveld Pepita Ministry of Health, Welfare and Sportsof the Netherlands, Public HealthDepartmentPoland Ołtarzewski Mariusz Institute of Mother and ChildPortugal Vilarinho Laura Newborn Screening Unit, MedicalGenetics InstituteRomania Vlădăreanu Ana Maria Bucharest Emergency UniversityHospitalSlovakia Dluholucky Svetozar Department of National ScreeningCentre of newborns Children UniversityHospital NamestieSlovakia Knapkova Maria Department of National ScreeningCentre of newborns Children UniversityHospital NamestieSlovenia Bratanic Borut Children's Hospital of the UniversityMedical Centre of Lubiana, NeonatalDepartmentSlovenia Zerjav-Tansek Mojca Children's Hospital of the UniversityMedical Centre of Lubiana, NeonatalDepartmentSpain Peña-Rey Isabel Oficina de Planificación Sanitaria yCalidad, Agencia de Calidad, Ministeriode Sanidad y Política Social47
Page 1 and 2: FINAL 28/08/2011EU Tender“Evaluat
Page 3 and 4: FINAL 28/08/2011Table of ContentsAc
Page 5 and 6: FINAL 28/08/2011AcknowledgmentsThe
Page 7 and 8: FINAL 28/08/2011PrefaceThe EU Counc
Page 9 and 10: FINAL 28/08/20111. IntroductionMore
Page 11 and 12: FINAL 28/08/2011health care service
Page 13 and 14: FINAL 28/08/2011of carrier status o
Page 15 and 16: FINAL 28/08/2011Non-discrimination
Page 17 and 18: FINAL 28/08/2011Chapter 3: Who: Gov
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Page 21 and 22: FINAL 28/08/2011Expert opinion on g
Page 23 and 24: FINAL 28/08/20114. Criteria to eval
Page 25 and 26: FINAL 28/08/2011discovered and trea
Page 27 and 28: FINAL 28/08/2011The discussion by t
Page 29 and 30: FINAL 28/08/2011Expert opinion to e
Page 31 and 32: FINAL 28/08/20115. Criteria on how
Page 33 and 34: FINAL 28/08/2011very difficult to j
Page 35 and 36: FINAL 28/08/2011may even be needed
Page 37 and 38: FINAL 28/08/2011Communication of un
Page 39 and 40: FINAL 28/08/2011Epidemiological eva
Page 41 and 42: FINAL 28/08/2011The NBS program sho
Page 43 and 44: FINAL 28/08/20117. Proposal for a m
Page 45: FINAL 28/08/2011vii) Are there pati
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