Network for orofacial Clefts Research, Prevention and Treatment (EUROCleftNet) 09-RNP-023
EuroCleftNet research conference
Plovdiv, Bulgaria, 27 – 27 September 2013
‘Completing the circle: shared opportunities to address the challenge of orofacial clefts.’
Pre-conference meeting 23 April 2013
1.Scientific Summary and Abstract
A EUROCleftNet conference in Plovdiv 2013 will showcase current research into aetiology, prevention and improved treatment outcomes. This international conference, supported by the European Science Foundation and the World Health Organisation, will provide a unique platform, bringing together clinicians, academics and representatives from industry to explore future research collaborations and discuss how knowledge can be translated into action for the benefits of the patient, their families and society.
A group of experts on birth defects in consultation with MEPs met in Brussels on 9th October 2012 to address significant issues in the field of birth defects. The debate highlighted in a succinct and very powerful way the extent of this problem, not only as a European but a global issue, with Europe showing tremendous leadership in (a) identifying the problems and related health inequalities and (b) through cutting edge infrastructure and research expertise, finding cost effective ways to address these problems.
The major highlights included:
- Birth Defects affect 1 in 50 births – around 13 million families across Europe
- Health inequalities across Europe are well documented, but health care and health and social service inequalities remain a major challenge
- Children with certain birth defects in Eastern Europe are still institutionalised and deprived of their basic human rights
- Birth defects are emerging as a major cause of both mortality (mainly in the developing world) and morbidity
- Europe leads the world in birth defects surveillance and registration
- Clinical trials have revealed much more cost effective and less burdensome treatments for birth defects but many of these have not yet been implemented
- There is scope for a massive reduction in health care costs for the treatment of birth defects
- Genomics research in birth defects in Europe is leading the rest of the world and there is a need to remain at this cutting edge, which requires further funding
- Patient groups are heavily involved in our birth defects research and make a very meaningful contribution
- There is a massive swing in the emphasis towards primary prevention in Europe and strategies with respect to lifestyle and behavioural change are being piloted and implemented.
In addition to this the World Health Organisation (WHO) are taking a special interest in birth defects and disabilities research in Europe and Dr Mario Merialdi, Director of Reproductive Health and Research at WHO issued the following statement: “initiatives such as that presented today in Brussels are extremely important in shaping the post millennium development goals agenda. After 2015, we expect to see an expansion of the interest of maternal and child health to move beyond an agenda focussed on survival of mothers and infants to a comprehensive life course approach on early child development (including pre-natal development). In the context of this new global health agenda, prevention and treatment of birth defects and disabilities will represent a major line of action”.
The Plovdiv conference themes follow on from the Brussels with an implementation agenda, and with internationally leading keynote speakers selected:
- Research into prevention; with the following subjects discussed
Diet and supplements
- Research into improving treatment; with the following subjects discussed
European outcome research collaboration to date
Audit and measurement
- Implementation issues relevant to both treatment and prevention of OFC
Translational issues – getting research into action to benefit patients
User involvement in research
Results of Gateway research project
Development of Bulgarian national register – a model for replication?
2. Meeting Programme
Meeting of the Organising Committee of
EUROCletNet Research conference – Plovdiv 2013
Craniofacial Surgery Unit, Medical University of Plovdiv
Tuesday 23rd April 2013
15.30 Arrival and check in, Hotel Sankt Petersberg, Plovdiv
16.00 Tour of conference facilities, Hotel Sankt Petersberg
16.30 Taxis to Medical University of Plovdiv (conference host)
17.00 Presentation by CIM, local conference company organiser. Questions.
17.30 Discussion of draft conference programme – approval of amendments
17.50 Conference workshop coordination – who to lead sessions?
18.15 Suggestion of candidates for membership of Scientific Committee to evaluate abstracts. Coordination of evaluation process
18.45 Budget considerations and funding flows (ESF – Dundee – ECO – ALA – CIM?)
19.15 Formal meeting closes