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 profe ssion or the public and where CF services are either non-existent or i n the early stages of development. The following common problems in su ch countries were identified. underdiagnosis; reduced life expectancy (relative to developed countries) among those diagnosed; a clinical pr ofile that may vary from the ''classic'' description; poor availabilit y of necessary drugs; and a lack of CF services or basic research on t he condition. The following recommendations were made concerning CF: n eonatal screening projects should be set up to determine its incidence and identify affected infants; national and regional laboratories sho uld be encouraged to identify the specific mutations responsible for t he 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 volunt eers, should be established; a national registry should be set up; awa reness about the condition should be improved and knowledge about it d eveloped among medical professionals, public health authorities, and t he general public; and increased collaboration between groups and orga nizations (including pharmaceutical companies) at the national, region al, and international levels should be developed in order to exchange information about and promote knowledge of CF, and to stimulate the de velopment of CF services in developing countries.