Ignite Creation Date:
2024-05-05 @ 5:33 PM
Last Modification Date:
2024-10-26 @ 9:33 AM
Study NCT ID:
NCT00474448
Status:
COMPLETED
Last Update Posted:
2022-05-18
First Post:
2007-05-15
Brief Title:
The Health-Related Quality of Life in Patients With Hereditary Multiple Exostoses
Sponsor:
University of British Columbia
Organization:
University of British Columbia
Study Overview
Official Title:
The Health-Related Quality of Life in Patients With Hereditary Multiple Exostoses
Status:
COMPLETED
Status Verified Date:
2017-05
Last Known Status:
None
Delayed Posting:
No
If Stopped, Why?:
Not Stopped
Has Expanded Access:
False
If Expanded Access, NCT#:
N/A
Has Expanded Access, NCT# Status:
N/A
Acronym:
None
Brief Summary:
The purpose of this study is to assess the health-related quality of life of subjects who have Hereditary Multiple Exostoses and to develop a disease specific quality of life survey The investigators hypothesize that there are a wide range of quality of life experiences for patients with this syndrome
Detailed Description:
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
Study Oversight
Has Oversight DMC:
None
Is a FDA Regulated Drug?:
None
Is a FDA Regulated Device?:
None
Is an Unapproved Device?:
None
Is a PPSD?:
None
Is a US Export?:
None
Is an FDA AA801 Violation?:
None