Areas for action

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Diagnosis and treatment

  • Pulmonary disease is the major cause of mortality and morbidity in CF; hence, innovative treatments need to be aimed primarily at the airways.
  • Continuing exploration of innovative treatment, including gene therapy, is necessary.
  • Anti-inflammatory drugs, which can suppress the type of inflammation that is an early feature of CF lung disease, need to be developed.
  • In the future, the demand for donor lungs for transplantation will far outnumber supply; therefore, donation from relatives will need to be increasingly encouraged.

Research

  • A fully funded European CF registry should be set up to monitor all trends and healthcare resource utilisation in CF patients.
  • New antimicrobial agents are needed to combat infections, particularly for organisms which are increasingly resistant to the currently available drugs.
  • New effective therapies safe enough to be given to young children before the onset of permanent lung damage need to be developed.
  • Currently, 0.4% of CF patients are alive due to a transplant. The possible use of transgenic animals as a source of supply of lungs for transplantation needs to be explored.

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