1 / 133

Yale School Of Management January 19-21, 2009 Tuesday

Yale School Of Management January 19-21, 2009 Tuesday. Implementing Interoperability National Perspectives. Curt Kolcun Vice President U.S. Public Sector Microsoft Corporation Bill O’Leary Executive Director of Health and Human Services Microsoft Corporation. What’s Working:

drea
Download Presentation

Yale School Of Management January 19-21, 2009 Tuesday

An Image/Link below is provided (as is) to download presentation Download Policy: Content on the Website is provided to you AS IS for your information and personal use and may not be sold / licensed / shared on other websites without getting consent from its author. Content is provided to you AS IS for your information and personal use only. Download presentation by click this link. While downloading, if for some reason you are not able to download a presentation, the publisher may have deleted the file from their server. During download, if you can't get a presentation, the file might be deleted by the publisher.

E N D

Presentation Transcript

  1. UPDATING AND PLANNING ON-LINE NOTIFICATION OF HUNGARIAN CONGENITAL ABNORMALITY REGISTRY AND SURVEILLANCE (HCARS) Judit Béres, János Sándor, Júlia Métneki Department of Hungarian Congenital Abnormality Registry and Surveillance National Centre for Healthcare Audit and Inspection, Budapest EUROCAT 24th REGISTRY LEADERS’ MEETING Bilbao, 11-12 June 2009

  2. HISTORY OF HCARS 1962 – Start of reporting establishedin the Heim Pál Children Hospital nationwide system 1970 - Official start (regulated by law) compulsory reporting 1974 - Monitoring of CAs temporal and geographical cluster analysis 1980 – Start of CA ethiological monitoring Hungarian Case-Control Surveillance of CAs (HCCSCA)

  3. REORGANISATIONS National Institute of Public Health (1970-1997) National Center for Epidemiology (1998-2006) Department of Human Genetics and Teratology, Hungarian Congenital Abnormality Registry and Surveillance (HCARS) National Centre for Healthcare Audit and Inspection (2006-) Congenital Abnormality Registry (HCARS)

  4. INTERNATIONAL MEMBERSHIPS 2003 – European Surveillance of Congenital Anomalies (EUROCAT) (www.eurocat.ulster.ac.uk) 1984-1998 – WHO Reference Center WHO Collaborating Center for the Community Control of Hereditary Diseases 1974 - International Clearinghouse for Birth Defects Surveillance and Research (ICBDSR) VRONY, founder full-legal member (www.icbdsr.org)

  5. HUNGARIAN CONGENITALABNORMALITY REGISTRY(HCAR) • Based on obligatory notification of congenital abnormalities (CA) cases by medical doctors • Continually collects, records and keeps the personal and health data of cases with CA from the birth till the age of one year (including the prenatally diagnosed and terminated malformed fetuses (from 1985 onwards)

  6. FUNCTIONS • REGISTRATION – by types, personal data, pregnancy outcome, medical diagnosis • MONITORING – clearing up of clusters and environmental risk factors • SURVEILLANCE– statistical evaluation of changes, time-trend analysis (years)

  7. CHARACTERISTICS OF HCAR • All Q00-Q99 CAs are registered • Covers whole Hungarian population 2006: 5770 affected cases (100.000 births/annually) • Epidemiological study on multiple congenital anomalies isolated: single, complex, sequens, polytopic field defect multiple: syndrome, association, random combination)

  8. ANNUAL REPORT Evaluations of CAs (tables, graphics, maps, etc.) • Observed frequency of CAs according to each CA by ICD codes • Pregnancy outcomes of cases with CA (live birth, stillbirth, miscarriage, therapeutic abortion, infant mortality) • Sex distribution (ratio of male/female) • Monthly distribution (seasonality) • Territorial distribution by counties Dissemination of Annual Reports • Management of Ministry of Health • State Health Public Service in the capitol and the counties • Directors of Clinics and Hospitals • Head of relevant departments of Clinics and Hospitals • Medical experts and general practitioners Summary of database is published on the web-site: www.oszmk.hu

  9. PRESENTSITUATION • 2007 – Frequency of notified cases above 5% – significant quantitative improvement • 2009 – Importance of qualitative changing Aims: - harmonization of national and international expectations - requirement to the „data quality minimum” - increasing the completeness of reported data - geographical homogeneity

  10. UPDATE OF HCARS Changes Essential Formal Modification Electronical of notification card notification

  11. MODIFICATION ON NOTIFICATION CARD More detailed information - Prenatally diagnosed CAs (indication, method) - Fertility intervention/treatment becaming pregnant (under discussion) (suggestion of treatment,type of intervention, etc.) Remarks - Criteria of diagnoses hernias – only in operated cases cong. pylorus stenosis – only in operated cases undescended testicle – from 3. postnatal month (in maturated newborn) Changes • Revision (exclusion of genetic diseases and some minor anomalies notified previously)

  12. MAIN CHANGES OF THE NOTIFICATION CARD Was the CA diagnosed prenatally? Yes No If yes: Indication of prenatal diagnosis(window) • maternal age • biochemical (abnormal value of triple,quarter, integrate test, AFP, other) • ultrasound feature • positive family history/pedigree Method of prenatal sample • genetic amniocentesis • chorion villi sample (CVS) • cordocentesis • biopsyfrom fetus tissues • maternal serum Laboratory method and result • cytogenetical (kariotyping, chromosome-binding, FISH) • DNA analysis (DNA sequences, other mutation analysis) • biochemichal parameter • fetus histopathology

  13. INFORMATICAL CHANGES Reorganizing the networks: - stopping of paper based reporting - web based reporting (questionnaire on the net) - building-in warning signals(planned) for software applied by hospitals /GPs/ outpatient clinics

  14. GENERAL ADVANTAGESOF ON-LINE NOTIFICATION • Simpler, cheaper, more rapid, no time-limit • Application of protective and control system – prevent the false data sending • Data-protection aspects

  15. SPECIFIC ADVANTAGES Valid data (diagnosis given by medical doctor) – ICD10version and diagnosis in word/legend appear together – (paper-based – ICD10 code was not alwaysindicated) Q37 Cleft palate with cleft lip • Q37.0 Cleft hard palate with bilateral cleft lip • Q37.1 Cleft hard palate with unilateral cleft lip Cleft hard palate with cleft lip NOS Q37.2 Cleft soft palate with bilateral cleft lip • Q37.3 Cleft soft palate with unilateral cleft lip Cleft soft palate with cleft lip NOS Q37.4 Cleft hard and soft palate with bilateral cleft lip • Q37.5 Cleft hard and soft palate with unilateral cleft lip Cleft hard and soft palate with cleft lip NOS Q37.8 Unspecified cleft palate with bilateral cleft lip • Q37.9 Unspecified cleft palate with unilateral cleft lip Cleft palate with cleft lip NOS Identified syndromes including CL and/or CP are coded by ICD10 Experts of HCARS try to identify multiple CAs including CL and/or CP on the bases of component CAs Unidentified multiple CAs are coded as Q89.7 (given each component CAs)

  16. TIME-SCHEDULE OF ON-LINE HCAR May 2009 Preparation of e-HCAR June 2009 Informatical and technical preparation July-September 2009 Sending information package for all potential notifying medical doctors 1 Sept. – 15 Dec. 2009 Transient period (paper-based - on-line method simultaneously used? 1. January 2010 Starting of on-line notification (paper-based notification will be over) Question need to answer: Is the overlapping period can be permitted? Is it necessary to use ICD9 version besides of ICD10 version? Should be all Q00-Q99 diagnoses registered? Transient period is difficult, first years are the most critical

  17. STARTING OF ON-LINE SYSTEM, DISSEMINATION Publications Hungarian Medical Journals (general and specific periodicals) - Magyar Orvos - Medical Tribune - Magyar Nőorvosok Lapja - Nőgyógyászati és Szülészeti Továbbképző Szemle - Gyermekgyógyászat Lectures/courses - Hospitals, universities - different medical forum Web-sides: - Medical societies

  18. NATIONAL RESEARCH I. • Ethiological study of cardiovascular abnormalities ETT project of Ministry of Health (2006-2209) Cooperation with the Foundation for the Community Control of Hereditary Diseases • Relation between parental occupational risk and congenital abnormalities in Hungary Study for the request of National Atomic Energy Office on the data-set of the Hungarian Case-Control Surveillance of Congenital Abnormalities • Ethiological study of maternal diseases. Cooperation with the Foundation for the Community Control of Hereditary Diseases (countinuous work)

  19. NATIONAL RESEARCH II. • Population-based monitoring of periconceptional folic acid use in order to explore the causes of unsufficient folic acid supplementation and to work out efficient methods for improving of periconceptional folic acid use Leader of project: Janos Sandor • Search for new and known susceptibility genes associated with neuropsychiatric disorders (schizophrenia, affective disorders, Alzheimer’s diseases and other dementias in roma and non-roma populations in Hungary OTKA project No. K 60589 Cooperation(2006-2009) with Department of Psychiatry, Medical University of Szeged. János Kálmán, MD. Ph.D) • Trend of prenatal diagnosis and DS in Hungary, 1990-2007

  20. INTERNATIONAL RESEARCH • International Clearinghouse (ICBDRS) – Very rare diseases project (ethiological study of amelia/phocomelia, syrenomelia, conjoined twins, bladder extrophy, cloaca exstrophy, acardius-acephalus) • Department of Epidemiology, Aarhus University (Aarhus, Denmark), (director: Henrik Toft Sorensen): Potentional teratogenic effect of maternal diseases, drugs, social status; ethiological study of gastroschosis • Institute of Demography, University of Louvain, BELGIUM (Catherine Gourbin, Vandresse Marie): Paternal age and CAs The impact of late fertility on congenital abnormalities • European Alliance of Neuromuscular Disorders Associations (EAMDA) – Frequent neuromuscular diseases in Gipsy population

  21. DOWN SYNDROME (DS) IN HUNGARY Number of total births: (2001-2007) 681,203 Known number of cases with DS: 1,169 Rate of DS*: 1.72‰ *(denominator: livebirths + late fetal deaths)

  22. RATE OF DS IN HUNGARY1970-2007

  23. REGISTERED RATE OF DS1990-2007 after active search before active search

  24. RATE OF CASES WITH DS BY PREGNANCY OUTCOME total cases live birth TOP after 16. week TOP before 16. week TOP = termination of pregnancy

  25. EUROPEAN RATE OF CASES WITH DS Hungary: 1,6-1,7 ‰ Average of European countries: 1,92 ‰

  26. CHANGING IN MATERNAL AGE significant demographic change in the maternal age ≤ 24: decreasing tendency (2007 - less than half of value in 1990-94) ≥ 30-35:increasing tendency (2007 – 2.5 higher than in 1990-94)

  27. RATE OF PRENATALLY DIAGNOSED CASES WITH DS EUROCAT 2000-2004: 51,9 % • - increasing trend • corresponds to EUROPEAN average • significant institutional and territorial differences

  28. e-HCAR CO-WORKERS OSZMK HCAR Júlia Métneki PhD human geneticist, supervisor János Sándor PhD medical-epidemiologist Andrea Valek MDmedical-epidemiologist Éva Pálffy assistant Monika Pataki assistant Éva Fekécs health visitor Judit Béres PhD human geneticist OSZMK Department of Informatic and Analysis Hangay István Drhead of department Professional assistance Béla Melegh Prof. MD President of the Hungarian Society of Human Genetics György Kosztolányi Prof. MD Member of the Hungarian Academy of Sciences

  29. USER-FRIEND HCAR Suggestions, remarks e-mail: e-vrony@oszmk.antsz.hu beres.judit@oszmk.antsz.hu www.oszmk.hu Thank you very much for your collaboration!

More Related