Vaincre la Mucoviscidose
The ONM (French Cystic Fibrosis Monitoring Centre) created in 1992 on the initiative of the association, became the French Cystic Fibrosis Patient Registry in 2006.
By supporting the creation and management of the Registry, the association aims to provide an exhaustive, high-quality database for researchers to facilitate studies and help in the advancement of research. More specifically, this tool has various objectives:
- Descriptive and analytical epidemiology
- Help for identifying priority issues in terms of care and research and for setting up clinical trials.
- Evaluation of healthcare practices
- To guide parents and patients in their personal choices and to guide the association and other institutional partners in their strategic choices
Data collection is carried out using a questionnaire comprised of three forms, filled out once per year by healthcare centres. The sending and receipt of questionnaires, as well the quality controls of the data, are ensured by the “Vaincre la Mucoviscidose” association. Analyses are carried out in conjunction with the INED (French National Institute of Demographic Studies).
A Steering Committee was established in 2009 with the aim of providing a strategic vision and arbitration in relation to scientific projects.
In 2009, the Registry was qualified by the CNR-MR (French National Committee of Registries - Rare Diseases) for 3 years, renewed for 4 years in 2011.
Missions and actions
4 missions to assist patients and find a cure
Vaincre la Mucoviscidose provides support for patients and their families in every aspect of their lives turned upside down by cystic fibrosis. The association is organised around 4 priority missions: to heal, provide care, improve the quality of life and increase awareness.
Finding a cure for tomorrow by supporting and financing research
Subsidies for basic and clinical research projects, development of clinical trials, distribution of scientific information (symposia, publications). This mission is the primary aim of the association, which is developing a diversified and ambitious research strategy in permanent conjunction with international research. For further information
Providing treatment today by improving the quality of care
Training of healthcare providers, epidemiological monitoring, and support for lung transplantation: the association is involved in all areas to ensure the optimisation of prevention and care. In addition, we finance specialised posts and projects in hospitals and in transplant centres. For further information
Coping with cystic fibrosis by improving patients' quality of life
We offer individual support for patients and their close relations in all areas of daily life (schooling, work, social rights, etc.), financial aid and collective actions with public authorities so that their social rights are better taken into account. For further information
Increasing the awareness of the general public and informing parents and patients
Cystic fibrosis is a complex genetic disease. It requires significant and regular information for both the families affected and professionals. Raising the awareness of as many people as possible generates indispensable support for the association’s missions.