Trial Information

The Health-Related Quality of Life in Patients With Hereditary Multiple Exostoses

At the time of recruitment, subjects will be asked to indicate whether they would like to
participate in a one-time survey, or are willing to participate in the initial survey plus
two additional questionnaire administrations, thereafter, which will be used to develop the
disease-specific quality of life (QOL) score. All participants will complete either the
SF-36 survey (for adult HME subjects) or the CHQ PF (for parents of children with HME), as
applicable, in addition to a blank form with categorical subheadings (such as recreation,
social function, etc.), which they will use to address any issues not covered in the
standardized questionnaire. Standardized questionnaires will be scored and analyzed. The
items listed on the second form will be compiled and reapplied to subjects that indicated
interest in extended participation in survey completion. Subjects will be asked to determine
which items apply to them and to rank these applicable items in order of importance. The
results from this will be used to develop a 30 question, disease-specific questionnaire. The
final step will be to readminister this survey, in conjunction with the SF-36 or CHQ PF, and
follow up, in two weeks, with a second administration of the aforementioned surveys, in
order to test the variability and validity of the disease-specific, health-related, quality
of life score.