CI

At a glance

ClinicalIndex Comparison Record
N/ACompleted· 302 enrolled
Drug / intervention
Not specified
Likely dose
Not stated in record
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Search/NCT00896272
NCT00896272N/ACompleted

Adaptation Among Adolescents and Adults With Klinefelter Syndrome

National Human Genome Research Institute (NHGRI)·observational·Posted May 11, 2009·Updated Dec 17, 2019

In Brief

An observational study for Klinefelter Syndrome. Completed, enrolled 302 participants across 1 site.

Detailed 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.

Study Details

Study Typeobservational
Allocation--
Masking--
Primary Purpose--
CountriesUnited States
Collaborators--

Timeline

N/ACompletedFinished
200920102011201220132014201520162017201820192020202120222023202420252026
First PostedMay 11, 2009
Enrollment StartMay 5, 2009
Study CompletionJan 13, 2015
TodayJul 2, 2026
Posted 17.1 years ago