1. Update of the Scientific Secretariat
Ségolène Aymé and Barbara Cagniard
Scientific Secretariat
IRDiRC Executive Committee - 24 September 2013

2. Task of the Scientific Secretariat
Serve the Executive Committee:
Organisation of the Executive Committee meetings
Assuring secretarial work for the consortium
Keeping all members updated
Support the work of the SCs and WGs
Organization of SC meetings and WG teleconference
Analysis of overlaps and areas for possible collaboration
Identification of trends/ emerging fields to be supported in the future

3. Task of the Scientific Secretariat
Contribute to the dissemination
Disseminate the results of IRDiRC projects with different means of communication
Manage the public and private website of IRDiRC
Edit content for newsletters
Prepare documents and reports for all committees
Organize IRDiRC conference
Monitor the activities
plan, organise and monitor the effort to achieve the objectives
run performance control procedures
inform on the project status and progress

4. Budget for 6 years: 2 000 000 € Staff Website Dissemination Travel
(4 staff)
Equipment Sub contracting Overheads Total
Details:
Conferences:
SC meetings:

5. Support to SCs and WGs

6. Meetings and Teleconference (TC) 2013
Invitation
DSC WG TC
WG Genome
WG Model Syst
WG Sequencing TC
WG Ontologies
WG Genome
DSC meeting
DSC TC
Invitation
ISC WG
ISC meeting
4 WG meeting TC
WG Biobanks
WG Datasharing
WG Registries
TC WG Ethics
TC WG Ethics
TSC meeting
March
April
May
June
July
August
September

7. Communication Dissemination

8. Old IRDiRC website home page

9. New IRDiRC website home page
New documents and information
Spotlight on initiatives
Internal news

10. New IRDiRC website home page
MEMBERS ONLY
Access to IRDiRC private website

11. IRDiRC private website
CATEGORIES
Forgot your password?

13. IRDiRC interviews and projects highlights
What is the main problem you will tackle?
What is the concrete solution that you have selected? What are the steps? At what stage are you today?
What can the patients, the clinicians or other stakeholders expect at the end of the project?
How is your project contributing to reaching the goals of IRDiRC by 2020?
Where does the project position itself in this particular field at the international level?
Interview of Dr M Posada - Spanish Rare Disease Registries Research Network
Interview of Dr G Andreotti and Dr MV Cubellis - Pharmacological chaperones to cure genetic diseases (Telethon Italy)

14. IRDiRC interviews and projects highlights
Please send suggestions for new interviews
Moreover, do not hesitate to send articles, interviews, videos, information on conferences etc. mentioning IRDiRC

15. Number of visits from July 19 to August 19, 2013
Total : 952

16. Number of visits from August 19 to September 19, 2013
Total : 1402

17. Data collection: update and ways to improve the system

18. Data collected For research project For clinical trials Title
Official title
Year of start and ending
Disease studied
Budget (stay confidential)
Type of therapie (drug, cell, gene, etc.)
Name of researcher
Participating countries
address of researcher
Contact information of PI for each country
Name of laboratory
Sponsor name
Name of hosting institution
EUDRACT number (Europe)
Funding entity
Recruitment status
Summary
Phase number
Start date and estimated completion date
Link to clinicaltrial.gov website

19. Use of data collected Orphanet database: IRDiRC website:
analysis of gaps and overlaps
IRDiRC website:
general information (Title, year of start and funding body)

20. Status of data collection
Research projects on the IRDiRC website/Orphanet
Canadian Institutes for Health Research, E-Rare, European Commission, Federal Ministry of Education and Research, AFM, Genome Canda, National Institute of Health Carlos III, NIH, NKT Therapeutics, Sanford Research, Telethon Foundation
Research projects being process
ANR 2010, KNIH, Shire
Research projects not received
Western Australian Department of Health, BGI, Lysogene, Instituto Superiore de Sanita, Prosensa, The Netherlands Organisation for Health Research and Development, National Institute of Health Research, PTC Therapeutics

21. How to improve the system
NIH: Extraction with NIH RePORTER and manual selection
Countries with Orphanet national teams
Countries without Orphanet National team
Please send us the information