Implementation of cystic fibrosis services in developing countries: memorandum from a Joint WHO/ICF(M)A meeting.

A Joint WHO/ICF(M)A meeting defined strategies for the implementation and development of cystic fibrosis (CF) services in countries where CF is thought to be more common than is appreciated by the medical profession or the public and where CF services are either non-existent or in the early stages of development. The following common problems in such countries were identified: underdiagnosis; reduced life expectancy (relative to developed countries) among those diagnosed; a clinical profile that may vary from the "classic" description; poor availability of necessary drugs; and a lack of CF services or basic research on the condition. The following recommendations were made concerning CF: neonatal screening projects should be set up to determine its incidence and identify affected infants; national and regional laboratories should be encouraged to identify the specific mutations responsible for the condition in their populations; centres for diagnosis and treatment should be developed, using a team approach; a national organization, involving families and friends of individuals with CF and other volunteers, should be established; a national registry should be set up; awareness about the condition should be improved and knowledge about it developed among medical professionals, public health authorities, and the general public; and increased collaboration between groups and organizations (including pharmaceutical companies) at the national, regional, and international levels should be developed in order to exchange information about and promote knowledge of CF, and to stimulate the development of CF services in developing countries.