European Network of Centres of Expertise for CF (Cystic Fibrosis), LAM (Lymphangioleiomyomatosis), and LTX (Lung Transplantation)

Acronym:
ENCE CF-LAM-LTX

Budget:
857.310,00 EUR (100% EU-funded)

Runtime:
01.04.2009 – 31.03.2011 (24 months)

Coordination:
Goethe University, Frankfurt
(T.O.F. Wagner)

Project Partners:

• Belfast Health and Social Care Trust
  (Stuart Elborn)
• The University of Nottingham
  (Simon Johnson)
  
• Hospices Civils de Lyon
  (Jean-François Cordier)
  
• Hannover Medical School
  (Tobias Welte)
  
• Medical University of Vienna
  (Walter Klepetko)
  
• Institut National de la Santé et de la Recherche Médicale (INSERM), Paris
  (Ségolène Aymé)
  
• Charles University, Prague
  (Milan Macek)
  

Abstract:

European Centres of Expertise Networks for rare diseases have been identified by the European Commission (EC) as one important area of future activity in the attempt to achieve one of the main objectives within the EC's endeavour of “optimising the delivery of health care to European Citizens.” It is obvious that especially in rare diseases the joint forces of the experts networking throughout Europe are more likely to meet the needs and expectations of patients than national services.

The construction and implementation of European networks of centres of expertise (ENCE) calls for input from many different stakeholders: patients, doctors, and other care team members, clinical researchers, health administration, and health insurers will have to be heard to arrive at a model of such networks that can easily be used as blueprint for most rare disorders.

To achieve this goal, first a mapping exercise of existing networks and elements needed for such networking has to be done. We plan to do so for three different rare entities – Cystic Fibrosis (CF), Pulmonary Lymphangioleiomyomatosis (LAM), and Lung Transplantation (LTX), all of which comply with the EC's definition of a rare disease. From the information gathered during this process, the areas of activity and a detailed set of criteria for such European Networks will be developed. These construction principles will be brought together in a blueprint to be applied to other rare disorders as well, and they can then be used for certification, quality control, and funding of a European system of networks.

Networking in this European sense will make the best possible use of  resources already at hand and remaining in the responsibility of the individual member states by interfacing and complementing these present and future elements. This will help the health care system partners to learn from the best and improve the quality of care in Europe to the highest level of expertise.

For further information, please contact:

Sophie Buchberger
Project Coordinator
E-mail: s.buchberger@em.uni-frankfurt.de
Ph: + 49 (0)69 - 6301 7229