A sustainable solution for the activities of the European network for surveillance of congenital anomalies: EUROCAT as part of the EU Platform on Rare Diseases Registration

European Journal of Medical Genetics

Volumn 61, Issue 9, 2018, Pages 513-517

  Kinsner Ovaskainen, Agnieszka ^a   Lanzoni, Monica ^a   Garne, Ester ^b   Loane, Maria ^c   Morris, Joan ^d   Neville, Amanda ^e   Nicholl, Ciarán ^a   Rankin, Judith ^f   Rissmann, Anke ^g   Tucker, David ^h   Martin, Simona ^a  

^a JOINT RESEARCH CENTRE   (Italy)

^b KOLDING HOSPITAL   (Denmark)

^c UNIVERSITY OF ULSTER   (United Kingdom)

^d QUEEN MARY UNIVERSITY OF LONDON   (United Kingdom)

^e UNIVERSITY HOSPITAL OF FERRARA   (Italy)

^f NEWCASTLE UNIVERSITY   (United Kingdom)

^g OTTO VON GUERICKE UNIVERSITY   (Germany)

^h PUBLIC HEALTH WALES   (United Kingdom)

Author keywords

Congenital anomalies; EU RD Platform; EUROCAT; JRC EUROCAT Central Registry; Surveillance

Indexed keywords

CONGENITAL MALFORMATION; EUROPE; FAMILY HISTORY; FETUS MALFORMATION; HEALTH SERVICE; HUMAN; KARYOTYPE; LIFESTYLE; LIVE BIRTH; MORTALITY RATE; PERINATAL MORTALITY; POLLUTION; PREGNANCY OUTCOME; PREGNANCY TERMINATION; PRENATAL DIAGNOSIS; PRIMARY PREVENTION; RARE DISEASE; REGISTER; REGISTRATION; REVIEW; STILLBIRTH; CONGENITAL DISORDER; EPIDEMIOLOGICAL MONITORING; STATISTICS AND NUMERICAL DATA;

CONGENITAL ABNORMALITIES; EPIDEMIOLOGICAL MONITORING; EUROPE; HUMANS; PRENATAL DIAGNOSIS; RARE DISEASES; REGISTRIES;

EID: 85051384551     PISSN: 17697212     EISSN: 18780849     Source Type: Journal    
DOI: 10.1016/j.ejmg.2018.03.008     Document Type: Review

References (15)

1. Boyd, P., Barisic, I., Haeusler, M., Loane, M., Garne, E., Dolk, H., Paper 1: the EUROCAT network: organization and processes. Bir. Def. Res. (Part A) 91 (2011), 2–15.
2. Complete list of EUROCAT members. Retrieved 22 February 23, 2018, from EUROCAT: http://www.eurocat-network.eu/pagecontent.aspx?tree=allmembers, (Accessed 23.02.2018).
3. EDMP User Guide. Retrieved 22 February 23, 2018, from EUROCAT: http://www.eurocat-network.eu/content/Section%202.4-%2027_Oct2016.pdf.
4. EUROCAT Guide 1.4. (2016). Retrieved 22 February 23, 2018: www.eurocat-network.eu/aboutus/datacollection/guidelinesforregistration/guide1_4.
5. EUROCAT Membership Criteria, Retrieved 22 February 23, 2018, from EUROCAT: http://www.eurocat-network.eu/content/Membership%20criteria_vs, (Accessed 23.02.2018).
6. EUROCAT Prenatal Detection Rrates. Retrieved 22 February 23, 2018, from EUROCAT: http://www.eurocat-network.eu/prenatalscreeninganddiagnosis/prenataldetection(pd)rates.
7. EUROCAT Prevalence Tables. Retrieved 22 February 23, 2018, from EUROCAT: http://www.eurocat-network.eu/accessprevalencedata/prevalencetables.
8. Report from the Commission to the European Parliament, the Council, the European Economic and Social Committee and the Committee of the Regions. Implementation report [COM(2014) 548 final] on the Commission Communication on Rare Diseases: Europe's challenges [COM(2008) 679 final] and Council Recommendation of 8 June 2009 on an action in the field of rare diseases (2009/C 151/02); http://eur-lex.europa.eu/procedure/EN/1042253 (accessed 22.02.2018).
9. European Reference Networks, From DG SANTE. Retrieved 22 February 23, 2018 https://ec.europa.eu/health/ern_en (accessed 23.02.2018).
10. Lanzoni, M., Joan Morris, J., Ester Garne, E., Maria Loane, M., Kinsner-Ovaskainen, A., European Monitoring of Congenital Anomalies: JRC-EUROCAT Report on Statistical Monitoring of Congenital Anomalies (2006–2015)., 2017, Publications Office of the European Union, Luxembourg ISBN 978-92-79-77304-4.
11. Martin, S., De la Cruz, J., Lanzoni, M., Nicholl, C., Transfer of the Central Database and Coordinating Activities of EUROCAT to the JRC. 2016, Publications Office of the European Union, Luxembourg ISBN 978-92-79-63771-1.
12. Notification DPO-3768.1: JRC Central Databases for EUROCAT and SCPE, From Register of the Data Protection Officer. Retrieved 22 February 23, 2018 http://ec.europa.eu/dpo-register/details.htm?id=38795.
13. Regulation (EC), No 45/2001 of the European Parliament and of the Council of 18 December 2000 on the protection of individuals with regard to the processing of personal data by the Community institutions and bodies and on the free movement of such data. Off. Journal L 008, 12/01/2001 p. 0001–0022.
14. Requesting EUROCAT Data, From EUROCAT. Retrieved 28 February 2018 http://www.eurocat-network.eu/aboutus/requestingeurocatdata.
15. Tolk, A., Diallo, S.Y., Turnitsa, C.D., Winters, L.S., Composable M&S web services for net-centric applications. J. Def. Model. Simul. 3:1 (2006), 27–44.