EUCERD Joint Action Workshop
Monitoring and Evaluation of Health Projects on Rare Diseases
27 – 28 November 2014 National Health Institute Doutor Ricardo Jorge, Lisbon – Portugal
WP 3 Workshop | Specific Objectives
1)
Updating on project’s evaluation tools
2)
Highlights on project’s monitorization
3)
Sharing experiences on health impact of research projects on Rare Diseases (RD)
4)
Raising awareness regarding EJA’s project
Outline (please follow the attached preliminary programme)
One and a half day workshop – November 27th and 28th,Lisbon
The first part of the workshop (November 27th morning) is expected to accomplish the 1st 2nd and 3rd objectives;
The second part of the workshop (November 27th afternoon) – consist of presentations on the EUCERD Joint
Action, main goals and individual WP’s by the representative partners. This will be followed by presentations
on the same topics by Portuguese experts showing the national position and promoting discussion among
participants.
The third part (November 28th morning) will be divided in:
o
EUCERD Joint Action partners meeting | closed session
o
National Registry of Congenital Anomalies (RENAC) meeting | closed session
Discussion on latest scientific results and new opportunities for collaboration.
For more information please contact WP3 team:
[email protected]
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PROGRAMME
Day 1 , 27.Nov.2014 (Thursday)
08:30 – 09:00
Registration
09:00 – 11:00
Project’s Monitorization and Impact Evaluation
Moderator: Natércia Miranda, National Health Institute Doutor Ricardo Jorge (INSA), Portugal
Institution and Speaker to be confirmed
Alexandre Abrantes, National School of Public Health/New University of Lisbon (ENSP-UNL), Portugal
11:00 – 11:30
Coffee-break
11:30 – 13:00
Overview of health impact of research projects on RD
Moderator: Dezso David, National Health Institute Doutor Ricardo Jorge (INSA), Portugal
The 100,000 genomes project: Opportunities for health care improvement and enhanced research into RD
Clare Turnbull, Genomics England Cancer Programme, London, UK
Health Impact of the Developmental Genome Anatomy Project on Congenital Anomalies
Cyntia C. Morton, Brigham and Women’s Hospital, Harvard Medical School, Boston, USA
13:00 – 14:00
Lunch and networking
14:00 – 14:30
Opening ceremony
Ministry of Health, Portugal (to be confirmed)
Director of the General Directorate of Health (DGS), Portugal
President of the National Health Institute Doutor Ricardo Jorge (INSA), Portugal
Kate Bushby, WP 1 and WP 8 | University of Newcastle upon Tyne (UNEW), United Kingdom
Glória Isidro, WP 3 | National Health Institute Doutor Ricardo Jorge (INSA), Portugal
14:30 – 14:45
EUCERD Joint Action
Kate Bushby, WP 1 | University of Newcastle upon Tyne (UNEW), UK
14:45 – 15:15
National RD plans/strategies
WP 4 Representative | Istituto Superiore di Sanità (ISS), Italy
WP 4 Representative | European Organization for Rare Diseases (EURORDIS), France
Anabela Coelho, General Directorate of Health (DGS), Portugal
15:15 – 15:45
Mapping national initiatives addressing the quality of care in the field of RD
Richard Woolley, WP 7 | Centre for Biomedical Network Research on Rare Diseases (CIBERER), Spain
Anabela Coelho, General Directorate of Health (DGS), Portugal
15:45 – 16:15
Specialized social services and integration of RD into social policies and services
Dorica Dan, WP 6 | European Organization for Rare Diseases (EURORDIS), France
Institution and Speaker to be confirmed
16:15 – 16:45
Sustainability and integration of RD initiatives across disease specific and national areas
Kate Bushby, WP 8 | University of Newcastle upon Tyne (UNEW), UK
Anabela Coelho, General Directorate of Health (DGS), Portugal
16:45 – 17:15
Coffee-break
17:15– 17:45
Adequate and established definition, classification and codification of RD
Ségolène Aymé, WP 5 | Institut National de la Santé et de la Recherche Médicale (INSERM), France
Jorge Sequeiros, Institute for Molecular and Cell Biology (IBMC), Portugal (to be confirmed)
17:45 – 18:00
Evaluation of the Joint Action
Glória Isidro, WP 3 | National Health Institute Doutor Ricardo Jorge (INSA), Portugal
Social Programme and Dinner
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PROGRAMME
Day 2 , 28.Nov.2014 (Friday)
Parallel
EJA
RENAC
Sessions
Closed session
Closed session
EJA’s
RENAC’s
Partners meeting
Partners meeting
09:00 – 09:30
09:30 – 10:00
10:00 – 10:30
10:30 – 11:00
Coffee-break
11:00 – 11:30
11:30 – 12:00
12:00 – 12:30
EJA’s
RENAC’s
Partners meeting
Partners meeting
12:30 – 13:00
13:00
Closing ceremony
Ministry of Health, Portugal (to be confirmed)
Director of the General Directorate of Health (DGS), Portugal
President of the National Health Institute Doutor Ricardo Jorge (INSA), Portugal
Kate Bushby, WP 1 and WP 8 | University of Newcastle upon Tyne (UNEW), United Kingdom
Glória Isidro, WP 3 | National Health Institute Doutor Ricardo Jorge (INSA), Portugal
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