Annual Meeting of the International Clearinghouse for Birth Defects Surveillance and Research

When

30 September 2018 - 03 October 2018

Where

Location: Hotel Olšanka, Prague, Czech Republic

Region: Europe

Objective

This is the 45th Annual Meeting of the International Clearinghouse for Birth Defects Surveillance and Research (ICBDSR or Clearinghouse). The agenda will include a meeting on September 30  for representatives of organizations which participate in World Birth Defects Day in March each year. Participants will evaluate progress over the past three years, plan the 2019 edition of  World Birth Defects Day., and discuss a plan for the next five years.

How to Register

Visit http://www.icbdsr.org/45th-icbdsr-annual-meeting/
or email centre@icbdsr.org by 31 August 2018
Reserve rooms by emailing rezervace@hotelolsanka.cz before 30 May 2018

Agenda

Sunday, September 30, 2018

9:00 - 13:00 Executive Committee meeting
14:00 - 18:00 Meeting of the World Birth Defects Day Participating Organizations (invitation only)
16:00 - 18:00 Registration ICBDSR Annual Meeting
19:30 Welcome cocktail at Hotel Olšanka

Monday, October 1, 2018

Welcome
Antonin Šípek, M.D., Charles University, Prague
Tomáš Zima, M.D., D.Sc., Head Institute of Medical Biochemistry and Laboratory Medicine, Charles University, Prague
Ladislav Dušek, Ph.D., Head of the Institute of Health Information and Statistics of the Czech Republic, Prague
Marcia Feldkamp, Ph.D., Chair, ICBDSR Executive Committee
8:50 - 9:20 Lorenzo Botto, M.D., Director ICBD/ICBDSR Centre
9:20 - 10:00 J. David Erickson Lecture: Salimah Walani, Ph.D., Vice President of Global Programs, March of Dimes
10:00 - 10:10 ICBDSR Distinguished Service Award: winner to be announced
10:10 - 10:50 Alessandra Lisi Award Winner Lecture
10:50 - 11:20 Keynote Lecture: Pablo Durán, MD, PhD, Pan American Health Organization (PAHO)
11:20 - 11:40 Coffee break - Networking
11:40 - 12:40 Session I - Oral communications
12:40 - 14:00 Lunch
14:00 - 15:45 Session II - Oral communications
15:45 - 16:45 Session III - Oral communications
16:45 - 17:00 Coffee break
17:00 - 18:00 Poster session I
20:00 Dinner at Hotel Ol šanka, included in the registration fee
 
Tuesday, October 2, 2018
8:30 - 10:30 Annual Business Meeting - First part (ICBDSR members only)
10:30 -10:45 Coffee break
10:45 - 12:30 Annual Business Meeting - Second part (ICBDSR members only)
12:30 - 13:30 Lunch
13:30 - 15:30 Session IV - Oral communications
15:30 - 16:00 Coffee break
16:00 - 17:00 Session V - Oral communications
17:00 - 18:00 Poster session II
19:00 Dinner in the city centre at Municipal House (personal pay)
 
Wednesday, October 3, 2018
Scientific Session on Rare Diseases - Moderator: Dr. Jiří Horáček and Dr. Antonín Šípek Jr
8:30 - 8:40 Introduction
8:40 - 9:20 Rare disease initiatives in the Czech Republic and European Reference Networks 2018: Milan Macek Jr., M.D., D.Sc.
9:20 - 10:00
Rare Diseases: focus on the rarest and the undiagnosed: Bruno Dallapiccola, M.D. , Scientific Directorate, Bambino Gesù Children's
Hospital IRCCS, Rome, Italy
10:00 - 10:45 Coffee break - Networking
10:45 - 11:15
Screening of Pregnancy complications: Pavel Calda, M.D., CSc., Head of the Centre of Fetal Medicine, General University Hospital,
Prague. Czech Republic
11:15 - 11:40 Non-invasive prenatal testing: where are we now and where are we going?: Martin Hynek, M.D., GENNET, Prague
11:40 - 12:05
Preimplantation genetic testing of monogenic diseases by karyomapping: Jakub Horak, Ph.D., Rerpomeda Center, Brno, Czech
Republic
12:05 - 12:35
Neonatal screening – The Czech experience: Viktor Kožich, M.D., CSc., Department of Pediatrics and Adolescent Medicine, General
University Hospital, Prague, Czech Republic
12:35 - 14:00 Lunch
Classification and Surveillance
14:00 - 14:20
Classification of rare diseases – the local translation of Orphanet classification: Miroslav Zvolský, M.D., Institute of health Information
and Statistics of the Czech Republic, Prague
14:20 - 14:40
Czech Registry of Congenital Anomalies - New online reporting system and the implementation of rare diseases reporting tools: Jitka
Jirova, M.Sc., Institute of health Information and Statistics of the Czech Republic, Prague.
14:40 - 15:10 Coffee break - Networking
15:10 - 15:30
Surveillance of rare diseases - UK Experience: Mary Bythell, M.Sc., Rare Disease Registration, National Congenital Anomaly and Rare
Disease Registration Service-NCARDRS, Public Health England, UK
15:30 - 15:50 Surveillance of rare diseases - the Spanish experience: Eva Bermejo Sanchez, Ph.D., Instituto de Salud Carlos III, Madrid ISCIII, Spain
15:50 - 17:00 Round Table – Discussion about registration and classificationof rare diseases

Contact Information

Sharon Dorsey

sdorsey@emory.edu

+1-404-727-5361