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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.

DELIVERABLES

Epidemiological data about Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome

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Epidemiology of ME/CFS in Europe: where we are and where we need to go
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Survey on ME/ CFS including epidemiology, diagnosis and health/social care in Europe from participating countries and from ECDC datasets

Deliverable 1
Report on existing ME/CFS biobanks, deployment and access, data availability and restrictions
Deliverable 2
Survey for capacity development target groups: PhD students/candidates, ECIs, young principal investigators, researchers, clinicians, health policy makers

Deliverable 10