METHODOLOGICAL CONSIDERATIONS FOR ESTABLISHING A RESEARCH REGISTRY OF DEAF AND HARD OF HEARING ADULTS.

THE GOAL OF PHASE I IS TO SHOW THE FEASIBILITY AND VALUE OF A LARGE NATIONAL DATABASE WITH NAMES AND PERTINENT DEMOGRAPHIC INFORMATION TO DERIVE A REPRESENTATIVE SAMPLE OF DEAF AND HARD-OF-HEARING ADULTS. THIS DATABASE WILL SERVE AS A RESOURCE FOR INVESTIGATORS REQUIRING ACCESS TO DEAF AND HEARING IMPAIRED RESPONDENTS, INFORMANTS, COLLABORATORS, AND RESEARCH PARTICIPANTS. ATTEMPTS TO STUDY THIS POPULATION HAVE BEEN DIFFICULT IN THE PAST BECAUSE SAMPLING EFFORTS TO IDENTIFY GROUPS OF INDIVIDUALS FROM WHOM GENERALIZED FINDINGS COULD BE OBTAINED WERE COST PROHIBITIVE. PHASE I WILL CLARIFY SOME OF THESE COMPLEXITIES AND CONCEPTUALIZE THE DATA BASE IN A WAY THAT ENSURES THAT DIFFERENT SUBGROUPS WILL BE ADEQUATELY REPRESENTED. GOALS WILL BE ACCOMPLISHED THROUGH A COMBINATION OF INTERVIEWS, SURVEYS OF PRIVATE AND PUBLIC RESEARCHERS AND EXISTING DATABASES, FOLLOWED BY ANALYSIS AND SYNTHESIS OF INFORMATION. DUE CONSIDERATION WILL BE GIVEN TO CONFIDENTIALITY AND FOLLOWING COSTS ASSOCIATED WITH DATA BASE MAINTENANCE. PHASE II WILL INVOLVE ACTUAL DATA COLLECTION, FUNCTIONAL DESCRIPTION AND SYSTEMS DESIGN, APPLICATION DEVELOPMENT, SYSTEM TESTING, AND ESTABLISHMENT OF A REGISTRY WHICH WILL PROTECT THE CONFIDENTIALITY OF RESPONDENTS. MAINTENANCE PROCEDURES WILL BE DEVELOPED IN PHASE III.