CYSTIC FIBROSIS CARRIER SCREENING EDUCATIONAL MATERIALS

THE EVENTUAL IMPLEMENTATION OF POPULATION-BASED CYSTIC FIBROSIS CARRIER SCREENING IS DEPENDENT ON DEVELOPMENT OF REQUIRED EDUCATIONAL MATERIALS. THE LONG-TERM OBJECTIVES ARE TO DEVELOP AN INTEGRATED PACKAGE OF PUBLIC AND PROFESSIONAL EDUCATION MATERIALS THAT WOULD MEET THE PRE-SCREENING NEEDS FOR EDUCATION AND INFORMED CONSENT OF THE PUBLIC, AND FOR THE PROFESSIONAL OFFERING THE TESTING. THE MATERIALS WOULD UTILIZE INNOVATIVE TECHNOLOGY SUCH AS INTERACTIVE COMPUTERS AND WOULD BE DEVELOPED FOR THE AVERAGE READER. SPECIFIC PHASE I AIMS ARE TO: 1) ASSESS PERTINENT CONTENT AND INNOVATIVE MODES OF DELIVERY; 2) DEVELOP A PRELIMINARY DESIGN FOR THE INTEGRATED PACKAGE OF MATERIALS; 3) COMPLETE A PROTOTYPE OF A PRE-SCREENING MATERIAL FOR USE WITH THE GENERAL PUBLIC; AND 4) PREPARE A FINAL DESIGN DOCUMENT FOR PHASE II. METHODS INCLUDE: 1) COMPREHENSIVE LITERATURE REVIEW; 2) EXPERT PANEL ON GENETIC SCREENING, GENETIC COUNSELING/EDUCATION, CYSTIC FIBROSIS, HEALTH EDUCATION, AND LEGAL/ETHICAL CONCERNS; 3) FOCUS GROUP OF POTENTIAL USERS ON CONSUMER CONCERNS; 4) USE OF A DESIGN TEAM TO DEFINE SCOPE OF PROJECT; 5) DEVELOPMENT OF A PROTOTYPE; 6) USE OF A FOCUS GROUP AND REVIEW PANEL OF EXPERTS TO PROVIDE PRELIMINARY TESTING FOR THE PROTOTYPE; AND 7) DEVELOPMENT OF DETAILED SPECIFICATIONS FOR DEVELOPMENT OF INTEGRATED PACKAGE OF EDUCATIONAL MATERIALS IN PHASE II.