Ségolène Aymé. Chair Topical Advisory Group for Rare Diseases

Size: px

Start display at page:

Download "Ségolène Aymé. Chair Topical Advisory Group for Rare Diseases"

Baldwin Campbell
6 years ago
Views:

Ségolène Aymé Chair Topical Advisory Group for Rare Diseases Dr Ségolène Aymé is a medical geneticist, director of research at the French Medical Research Council (INSERM).

1 Ségolène Aymé Chair Topical Advisory Group for Rare Diseases Dr Ségolène Aymé is a medical geneticist, director of research at the French Medical Research Council (INSERM). She is the executive manager of the Inserm department dedicated to information on rare diseases in Paris. This service established in 1997 the European database of rare diseases and orphan drugs named Orphanet ( currently funded by the French ministry of health, the Inserm and the European commission (DG Public Health and DG Research). She was the founder and the first president (1997 to 1999) of the International Federation of Human Genetics Societies. She is the current chairperson of the Public and Professional Policy Committee of the European Society of Human Genetics which is releasing recommendations and guidelines ( and the leader of the Rare Diseases Task Force established by the European Commission, DG Public Health and Consumers protection. She is also the chairperson of the French Society of Human Genetics and the editor-in-chief of the Orphanet Journal of Rare Diseases ( Orphanet, Inserm SC11-102, Rue Didot - F, Paris, France

2 Christopher G. Chute Chair of the Revision Steering Group Dr. Christopher Chute received his undergraduate and medical training at Brown University, internal medicine residency at Dartmouth, and doctoral training in Epidemiology at Harvard. He is Board Certified in Internal Medicine, and a Fellow of the American College of Physicians, the American College of Epidemiology, and the American College of Medical Informatics. He became Head of the Section of Medical Information Resources at Mayo Foundation in 1988 and is now Professor and Chair of Biomedical Informatics. As a career scientist at Mayo, Dr. Chute s NIH and AHCPR/AHRQ funded research in medical concept representation, clinical information retrieval, and patient data repositories have been widely published. He is a Board member of the ANSI Health Information Standards Technology Panel, Convener of Healthcare Concept Representation WG3 within the ISO Health Informatics Technical Committee, chair-elect of the US delegation to ISO TC215 for Health Informatics, cochair of the HL7 Vocabulary Committee, Chair of the Biomedical Computing and Health Informatics study section at NIH, and has served on or chaired multiple other NIH biomedical informatics study sections. He has chaired the International Medical Informatics Association WG6 on Medical Concept Representation since Mayo Clinic College of Medicine 710 9th Ave SW Rochester MN 55902, USA

3 Marjorie S. Greenberg Chair of the Planning Committee of the WHO-FIC Marjorie S. Greenberg is Chief of the Classifications and Public Health Data Standards Staff (CPHDSS) at the National Center for Health Statistics (NCHS), Centers for Disease Control and Prevention, U.S. Department of Health and Human Services (DHHS) The CPHDSS serves as a nucleus within NCHS for data standards and classification by fostering the collaborative development of tools and guidelines to enhance the integrity, comparability, quality, and usefulness of the data products from a wide variety of public and private agencies at the international, national and sub-national levels. Ms. Greenberg, who has been with NCHS since 1982, also serves as Executive Secretary to the National Committee on Vital and Health Statistics, which is the external advisory committee to DHHS on health information policy. She has been Head of the WHO Collaborating Center for the Family of International Classifications (FIC) for North America since 1996 and has chaired the WHO-FIC Education Committee since its inception in Ms. Greenberg is the chair of the WHO-FIC Network Planning Committee and also is an ex-officio member of the Joint Collaboration with the International Federation of Health Records Organizations (IFHRO). Her areas of interest and expertise include health data standardization, uniform health data sets, health classifications, training and education, data policy development and evaluation policy. She speaks and writes on these subjects for national audiences and co-authored the chapter on Standards and Their Use in Health Statistics in a comprehensive edited volume on Health Statistics (Oxford University Press, 2005). Ms. Greenberg is a founding member of the Public Health Data Standards Consortium, and serves on the Consortium Board of Directors as Vice President for Federal agencies and is the Consortium s federal representative to the National Uniform Billing Committee. Ms. Greenberg received her bachelor s degree from Wellesley College and a master s degree from Harvard University. National Center for Health Statistics Centers for Disease Control and Prevention 3311 Toledo Road, Room 2413 Hyattsville, MD 20782, USA

James E Harrison Chair of the Topical Advisory Group External Causes and Injuries Dr James Harrison is an injury epidemiologist who directs the Research Centre for Injury Studies at Flinders

4 James E Harrison Chair of the Topical Advisory Group External Causes and Injuries Dr James Harrison is an injury epidemiologist who directs the Research Centre for Injury Studies at Flinders University, in South Australia. He is an Associate Professor in the School of Medicine at the university. The Research Centre operates the National Injury Surveillance Unit (NISU) of the Australian Institute of Health and Welfare, which he also directs. NISU is Australia's national centre for injury surveillance. It's many publications are accessible on-line. Dr Harrison and the NISU team make extensive use of mortality data and hospital data classified according to the International Classification of Diseases (ICD). During the past decade, they have worked closely with Australia's National Centre for Classification in Health concerning the injury and external causes chapters of the Australian clinical versions of ICD-9 and ICD-10, providing advice and making submissions concerning the content of revisions. Dr Harrison is currently a chief investigator in a project to evaluate the quality of ICD external cause coding of hospitalised injury cases in Australia. Dr Harrison has been actively involved with the development of the International Classification of External Causes of Injury (ICECI) since its inception, and is a member of the ICECI Coordination and Development Group. He is also a longstanding active participant in the International Collaborative Effort on Injury Statistics, convened by the US National Center for Health Statistics. Dr Harrison holds a degree in medicine from Melbourne University, a Master of Public Health degree from the University of Sydney, and is a Fellow of the Australasian Faculty of Public Health Medicine. His main areas of research interest are injury prevention and control, and methods and infrastructure for public health surveillance and evaluation, including classifications. Research Centre for Injury Studies Flinders University - School of Medicine National Injury Surveillance Unit AIHW, Sturt Road, Bedford Park, Adelaide, Australia

Steven E. Hyman Chair of the Topical Advisory Group Mental Health Steven E. Hyman, MD is Provost of Harvard University and Professor of Neurobiology at Harvard Medical School.

5 Steven E. Hyman Chair of the Topical Advisory Group Mental Health Steven E. Hyman, MD is Provost of Harvard University and Professor of Neurobiology at Harvard Medical School. From 1996 to 2001, he served as Director of the National Institute of Mental Health (NIMH), the component of the US National Institutes of Health charged with generating the knowledge needed to understand and treat mental illness. Before serving as Director of NIMH, Dr. Hyman was Professor of Psychiatry at Harvard Medical School, Director of Psychiatry Research at Massachusetts General Hospital, and the first faculty Director of Harvard University's Mind, Brain, and Behavior Initiative. In the laboratory he studied the regulation of gene expression by neurotransmitters, especially dopamine, and drugs that act on dopamine receptors. Dr. Hyman is a member of the Institute of Medicine of the National Academy of Sciences, a Fellow of the American Academy of Arts and Sciences, and a Fellow of the American College of Neuropsychopharmacology. He is Editor of the Annual Review of Neuroscience. He received his BA from Yale College in 1974 summa cum laude, and his MA from the University of Cambridge in 1976, which he attended as a Mellon fellow studying the history and philosophy of science. He earned his MD from Harvard Medical School in 1980 cum laude. The Office of the Provost Massachusetts Hall, Harvard University Cambridge, MA 02138, USA

Robert Jakob Medical Officer for ICD Classifications and Terminology World Health Organization Robert Jakob, MD is Medical Officer of WHO in charge of the ICD and derived classifications, since 2005.

6 Robert Jakob Medical Officer for ICD Classifications and Terminology World Health Organization Robert Jakob, MD is Medical Officer of WHO in charge of the ICD and derived classifications, since From 2001 to 2005, he served at the German Institute for Medical Documentation and Information (DIMDI), a federal authority, which is also a WHO-FIC Collaborating Centre. He led a team that helped formulate a German emergency data set, and other data sets for the German electronic health card, as well as creating a registry for electronic objects (OID) in health. He was earlier in charge of ICD use in mortality statistics, the ICD adaptation for Oncology, the ICF (International Classification of Functioning, Disability, and Health), and consulting for the classification of procedures in medicine. Dr Jakob s fluency in four languages facilitated his participation in the international activities of the Network of the WHO-FIC Collaborating Centres. Dr Jakob was a surgeon at the St Vincenz Hospital in Datteln from , and set up and ran the hospital information system. Dr Jakob is member of the German Society of Medical Informatics, Biometry and Epidemiology, has a diploma in medical quality management (German Medical Board) and management of health and social institutions (Univ. Kaiserslautern). He is a board certified surgeon and received his medical education at the University of Essen. Further information World Health Organization 20, Av. Appia 1211 Geneva, Switzerland Tel

Richard Madden Chair of the Family Development Committee WHO-FIC Dr Richard Madden is Professor and Director of the National Centre for Classification in Health at the University of Sydney.

7 Richard Madden Chair of the Family Development Committee WHO-FIC Dr Richard Madden is Professor and Director of the National Centre for Classification in Health at the University of Sydney. The Centre produces ICD-10-AM and the Australian Classification of Health Interventions, and works across a range of health classification and terminology issues. He plays an active role in WHO work on health and related classifications. Dr Madden was Director of the Australian Institute of Health and Welfare, Australia's national health and welfare statistics agency, for 10 years up to January Previously he was Deputy Australian Statistician for three years. In earlier roles, Richard Madden worked in government health and disability agencies, and headed the ACT and the Northern Territory Treasuries. He is a statistician and an actuary, being Australian Actuary of the Year in Dr Madden has a Bachelor of Science from Sydney University and a PhD in statistics from Princeton University. In the Australia Day honours list of 2003, Dr Madden was awarded the Public Service Medal in recognition of the commitment he has made to improve national health and welfare data collection and standards. National Centre for Classification in Health, Faculty of Health Sciences, University of Sydney P.O.Box 170, Lidcombe NSW 1825 Australia

Mea M. C. Renahan Chair of the Update and Revision Committee of the WHO-FIC Mea Renahan is a business executive with over 25 years in health-care administration.

8 Mea M. C. Renahan Chair of the Update and Revision Committee of the WHO-FIC Mea Renahan is a business executive with over 25 years in health-care administration. She is a Certified Health Executive with the Canadian College of Health Service Executives. She holds a Masters in Business Administration from York University and an Honours Bachelor of Science in Physical Therapy from the University of Toronto. Since January of 2002, she has held the position of Manager of Classifications Standards at the Canadian Institute for Health Information (CIHI). CIHI is a pan-canadian, independent, not-forprofit organization whose mandate is to improve the health of the health system and the health of Canadians by providing reliable and timely health information. In this position she is responsible for the development, maintenance, adoption and implementation throughout Canada of the International Statistical Classification of Diseases and Related Health Problems, 10 th Revision, Canada (ICD-10-CA) and the Canadian Classification of Health Interventions (CCI) in both English and French. She manages a cross-country and bilingual team of Health Information Management (HIM) Professionals. Her administrative career has spanned: acute; long term; rehabilitation, and community care at both local and provincial levels. As the Vice President of Client Services for The Arthritis Society, Ontario Division, she was responsible for directing the development and delivery of client services to people with arthritis throughout Ontario. She designed and implemented provincewide volunteer supported Community Arthritis Programs. She held the position of Director of Physiotherapy at St. Joseph s Health Centre in Toronto, a multi-level hospital serving West Toronto with 803 beds and over 1,400 employees. Her other credentials include - - Chair. WHO Update and Revision Committee (URC) Member, WHO-FIC Planning Committee Member, Board of Directors for the Canadian Therapeutic Riding Association Member, Executive Committee, University of Toronto P&OT Alumni Association Canadian Institute for Health Information 90 Eglinton Avenue East, Suite 300 Toronto ON M4P 2Y3, Canada

Kentaro Sugano Chair of the Topical Advisory Group Internal Medicine Dr Sugano received his doctorate and degree in medicine at the University of Tokyo.

9 Kentaro Sugano Chair of the Topical Advisory Group Internal Medicine Dr Sugano received his doctorate and degree in medicine at the University of Tokyo. Further education at the Tokyo University Hospital led to the PhD. Dr Sugano did research at the University of California, and the University of Michigan. His further career continued at the University of Tokyo and the Jichi Medical School. Dr Sugano is Chief Professor and Chairman of the Department of Internal Medicine, Jichi Medical University and Deputy Director of Jichi Medical University Hospital. Dr Sugano is member of several national and international medical societies (Japanese Society of Internal Medicine (council member), Japanese Society of Gastroenterology (member of the board of directors), Japanese Gastroenterological Endoscopy Society (council member), Japanese Society for Helicobacter Research (council member), Japanese Gastric Cancer Association (council member), American Gastroenterology Association, Steering Committee Member of the International Gut Hormone Conference) He is co-editor of Gastric Cancer since 1998 and has been editor or advisor to several other renowned international journals. Some 300 research publications underpin his expertise in the field of internal medicine. Department of Internal Medicine, Jichi Medical School Yakushiji Shimotsuke Japan

Martti Virtanen Chair of the Terminology Reference Group of the WHO-FIC After my graduation as Medical Doctor, I worked in General practice for a year.

10 Martti Virtanen Chair of the Terminology Reference Group of the WHO-FIC After my graduation as Medical Doctor, I worked in General practice for a year. I was a teacher at Institute of Public Health at Helsinki University. During my specialisation to Paediatrics, I worked first at the Helsinki City Hospital paediatric department and continued the specialisation at the University Central Hospital Children s Hospital in Helsinki. After my Thesis, I started MSc studies in Epidemiology at McGill University in Montreal Canada. My master s thesis was about immediate adverse effects of Measles Mumps Rubella vaccination in Finland in a double blind cross-over twin study with interesting methodological aspects. I continued my work at a local Hospital in Helsinki area as Paediatrician. I got involved with the Finnish and Nordic Medical Birth Register work. I participated in the medical classification work at the Children s Hospital. In 1994, I was first involved with the Finish DRG work and then with the implementation of ICD-10 in Finland and during 1995 with the Finish implementation of the Nomesco Classification of Surgical Procedures (NCSP) developed by the Nordic Countries. I started this work as a consultant to Stakes and continued later as co-worker. I started simultaneously the work with the Nordic DRG system (NordDRG) in I developed the grouping rules and the maintenance tools for the System. This work was done from the beginning for the Nordic Centre for Classifications in Health Care, situated in Uppsala at the Uppsala University Institute for Public Health and Caring Sciences. In 2000, I became a permanent co-worker at the Nordic Centre as Classification Expert. Since year 2003, I have been the Head of the Nordic Centre. I am the co-chair of the WHO-FIC Implementation Committee and the co-chair of Terminology Reference Group (TRG) since I have been a member of the Wonca International Classification Committee since I chair the group that organizes collaboration of WHO-FIC and WICC, which resulted in acceptance of ICPC-2 (International Classification of Primary Care, second revision) as a related member of the WHO-FIC system. My professional qualifications include Medical Doctor, University of Helsinki, Finland, 1980, PhD (Medicine), University of Helsinki, Finland, 1988, Specialist in Paediatrics, University of Helsinki, Finland, 1988, MSc Epidemiology, McGill University, Montreal, Canada, 1992 and Specialist in Neonatology, University of Helsinki, Finland, Department of Public Health and Caring Sciences, Uppsala University Uppsala Science Park SE-75185, Uppsala, Sweden

11 Tevfik Bedirhan ÜSTÜN Coordinator, Classifications and Terminology World Health Organization Dr. Üstün has worked in WHO since 1990 first in Mental Health, then in Evidence Cluster as an international health officer and formed multiple international networks on Classification and Assessment of Health and Disability; Mental Health Epidemiology, and Primary Care applications of classification and training programmes. Currently he is responsible for the WHO s Family of International Classifications (ICD, ICF and other health classifications); and development of standardized health terminologies. Dr. Üstün is the author and co-author of more than 150 articles, several books on psychiatry, primary care, classifications and health assessment. Further information World Health Organization 20, Av. Appia 1211 Geneva, Switzerland

Proposals for future collaboration between WHO-FIC and Wonca/WICC.

Proposals for future collaboration between WHO-FIC and Wonca/WICC. WHO-FIC 2005/B.4.4 WHO-FIC NETWORK MEETING Tokyo, Japan WHO-FIC and Wonca/WICC. Abstract. Niels Bentzen Anders Grimsmo This paper was prepared by Niels Bentzen and Anders Grimsmo for discussion by the