Added value of networking
In order to undertake collaborative research on ME/CFS, a collaborative network involving researchers, clinicians and patient organizations will be established in Action. The network will facilitate communications between participants, enabling them to develop collaborative research at an international level, and proposals to accomplish the development of a series of infrastructure facilities, including a database containing clinical and demographic details of people with ME/CFS, taking into account the scientific and regulatory challenges to establish a tissue sample bank.
The initial phase of the proposed Action will coordinate the data gathering on existing ME/CFS related clinical and scientific databases and their characteristics, such as inclusion criteria, data items collected, date of origin, number of cases, primary purpose (e.g. to support clinical work, clinical audit, or research), whether single centre-based or multicentre, whether population-based, whether based in primary, secondary or tertiary care, status (pilot or definitive application), uses to which the data are put, and access provisions.
The synchronisation efforts will coordinate the ethical and legal framework within which the database operates. This part of the Action will facilitate a feasibility study of the construction of a common database and standard selection. This will coordinate whether such a facility can be constructed on the basis of existing databases, or would have to be an entirely new development. Following these initial phases, a WEB-based network platform, which will aim at inclusiveness, will be established.
This will require the prior development of a template, in order to systematise the admission of patients to the database. This will be facilitated by the knowledge exchange strategy, which will enable the best experiences of operating existing databases to be shared and how these could be merged into one synchronised template.