Epidemiology WORKING GROUP

Tasks of the first period of the project

Explore of ways to collect population based data on the prevalence of ME/CFS;

• Explore of the potential of existing cohorts;
• review the characteristics of existing clinical databases  manteined by collaborating institutions;
• Survet existing epidemiological data on  ME/CFS in partecipating countries

Our Mission

Objective:

to establish a joint open epidemiological platform to explore the use of available data within the EUROMENE

• Task 1: To survey existing epidemiological data on ME/CFS in participating countries
• Task 2: To organize two meetings per year (could be also teleconferences) to discuss and analyse the existing data and approaches to set up the common database;
  the existing data and approaches to set up the common database;
• Task 3: To survey existing disease-related ME/CFS biobanks and to develop common protocols for biobanks creation in each country;
• Task 4: To discuss and propose a common ethics and legal framework for enabling the sharing of samples among collaborating biobanks for ME/CFS research purposes.

Milestones

• Survey data on epidemiology and biobanks presented in synchronisation group M6;
• Ethical framework version 1 presented on MC M24.

Curriculum Vitae

MC

• Jesus Castro
• Slobodan Sekulic
• Eliana Lacerda
• Fernando Estevez Lopez
• Nuno Sepulveda

Substitutes

• • Maja Vukadinovic
  • Jordi Miro

Participants

• • Inger Johanne Bakken
  • Andrejs Ivanovs
  • Francis Guillemin

DELIVERABLES