Ignite Creation Date:
2024-05-05 @ 9:28 PM
Last Modification Date:
2024-10-26 @ 10:05 AM
Study NCT ID:
NCT00896272
Status:
COMPLETED
Last Update Posted:
2019-12-17
First Post:
2009-05-08
Brief Title:
Adaptation Among Adolescents and Adults With Klinefelter Syndrome
Sponsor:
National Human Genome Research Institute NHGRI
Organization:
National Institutes of Health Clinical Center CC
Study Overview
Official Title:
Adaptation Among Adolescents and Adults With Klinefelter Syndrome
Status:
COMPLETED
Status Verified Date:
2015-01-13
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:
This study aims to understand the impact of living with Klinefelter syndrome KS and the factors that contribute to adaptation in adolescents and adults Individuals with KS may have variable symptoms including hypogonadism gynecomastia learning disabilities and delay and underdevelopment of secondary sexual characteristics Perhaps the most challenging symptom of KS is infertility which seems to be a universal symptom It is not fully understood how males with KS conceptualize their condition cope with their diagnosis and adapt to living with this condition In this study Lazarus and Folkman s Transactional Model of Stress and Coping provides a framework for examining coping and adaptation in males with KS A cross-sectional research design using a quantitative survey will be utilized to examine the relationships among appraisals illness perceptions and perceived stigma time elapsed since learning of diagnosis coping and adaptation Adolescents and adults with KS will be recruited from national KS support networks via website postings email listservs and printed newsletter postings Adolescents will also be recruited from a private practice Participants will have the option to complete an online or paper version of the survey The main outcome variable is adaptation to living with a KS diagnosis
Detailed Description:
This study aims to understand the impact of living with Klinefelter syndrome KS and the factors that contribute to adaptation in adolescents and adults Individuals with KS may have variable symptoms including hypogonadism gynecomastia learning disabilities and delay and underdevelopment of secondary sexual characteristics Perhaps the most challenging symptom of KS is infertility which seems to be a universal symptom It is not fully understood how males with KS conceptualize their condition cope with their diagnosis and adapt to living with this condition In this study Lazarus and Folkman s Transactional Model of Stress and Coping provides a framework for examining coping and adaptation in males with KS A cross-sectional research design using a quantitative survey will be utilized to examine the relationships among appraisals illness perceptions and perceived stigma time elapsed since learning of diagnosis coping and adaptation Adolescents and adults with KS will be recruited from national KS support networks via website postings email listservs and printed newsletter postings Adolescents will also be recruited from a private practice Participants will have the option to complete an online or paper version of the survey The main outcome variable is adaptation to living with a KS diagnosis
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
Secondary IDs
| Secondary ID | Type | Domain | Link |
|---|---|---|---|
| 09-HG-N142 | None | None | None |