The stakeholders

In the field of cystic fibrosis, the stakeholders (patients, scientists, healthcare workers, institutional organisations, and the pharmaceutical industry) have been getting organised for a number of years now in terms of putting the focus on the patient's interest. They are proactive from the level of basic research (which improves knowledge of the disease) to clinical research, which builds on this knowledge to establish new therapeutic strategies.

Basic research

This is essential for discovering new therapeutic target.

In France, it is mainly ensured by the public scientific and technological institutions INSERM (French National Institute for Health and Medical Research), CNRS (French National Scientific Research Centre), INRA (French National Institute for Agronomic Research), and the academic laboratories. Their routine activities are mainly financed by public fundings. Vaincre la Mucoviscidose contributes significantly to the implementation of specific research projects.

Clinical research

This is a decisive step to made available to patients – as fast as possible - innovative therapeutic solutions, in safe conditions.
It requires the involvement of healthy volunteers and patients. It is implemented and monitored by official organisations: ANSM (French National Agency for Medicines and Health Products safety), DGOS (French General Healthcare Department), HAS (French High Health Authority), CPP (French Ethical Review Board). The pharmaceutical industry finances 80% of clinical trials. In 2008, "Vaincre la Mucoviscidose" created the French cystic fibrosis clinical research network (“Plateforme Nationale de Recherche Clinique en Mucoviscidose” [Cystic Fibrosis Clinical Research Platform] – link to PNRC), in collaboration with the "Société Français de Mucoviscidose" (French Cystic Fibrosis Society), and the two cystic fibrosis reference centres. The action of this network is reinforced by its synergy with the French Cystic Fibrosis Registry which facilitates patient recruitment in clinical studies, among other things.
Research is international.

The European Cystic Fibrosis Society - ECFS brings together clinical practitioners and scientists to improve care and develop research into cystic fibrosis.  Every year, this society organises the European cystic fibrosis conference where scientists and physicians exchange their latest observations and discoveries. It also runs the European Cystic Fibrosis Registry and the European Cystic Fibrosis Society - Clinical Trials Network (www.ecfs/ "Vaincre la Mucoviscidose" works in close collaboration with the ECFS and the European patients' organisations.
©Fotolia - lunamarina