The main aim of the Action is to ensure that children born with orofacial clefts and other craniofacial conditions receive optimum multidisciplinary care enabling them to grow up like any other child and attain equal status within their societies. Estimates indicate that there are over 1,000 000 individuals with clefts in Europe - a significant figure, especially when one considers that not only the patients but also their families are affected in terms of psychosocial adjustment and having to endure the burden of a long treatment pathway.
The Action, in particular, will work with COST Inclusiveness Target Countries where limited or no national protocols exist in cleft and craniofacial care and will, via healthcare research, develop health-integrated networks which will manage and oversee the development of cleft and craniofacial services. Europe currently lacks a harmonised approach to evaluate the current provision of care, the impacts on key areas of the affected families and society at large. This Action will coordinate and increase research across Europe and will forge crucial links between researchers, practitioners, and policy-makers, offering the potential for significant benefits to the families affected by orofacial clefts and other craniofacial conditions in Europe.
To achieve the main objective described in this MoU, the following specific objectives shall be accomplished:
- Evaluate how the participatory cleft and/or craniofacial teams in the Action are functioning on the following levels;
a. The primary level; the patient as the beneficiary;
b. The level of the organisational context; the multidisciplinary team;
c. The level of funding and policies; administration and resources.
- A key focus will be on how best to design studies in the different treatment areas that can increase knowledge about what works most effectively in relation to the three levels.
- Share scientific knowledge on treatment, research methods and organisational implementation in the different disciplinary groups in cleft and craniofacial care.
- Identify and agree on specific indicators (mechanisms of change) and adequate assessment tools.
- Achieve consensus on core measures in the multidisciplinary groups.
- The Working Groups will provide a structured environment within which mentoring and guidance will be offered to new researchers - ECIs and ITC researchers will gain experience of project leadership by participating in WG meetings and plenary sessions.
- 20 STSMs will be organized, 15 of the STSMs will support ECls and/or ITC researchers to interact with and learn from more experienced researchers. Equal gender balance for the STSMs.
- Promote the sustainability of the network beyond the life of the Action.
- Support a high proportion of ECls and especially female and ITC researchers in the COST Action.