Ignite Creation Date:
2024-05-05 @ 7:31 PM
Last Modification Date:
2024-10-26 @ 9:50 AM
Study NCT ID:
NCT00684398
Status:
COMPLETED
Last Update Posted:
2019-12-16
First Post:
2008-05-22
Brief Title:
Adaptation and Quality of Life Among Adults With Neurofibromatosis Type I
Sponsor:
National Human Genome Research Institute NHGRI
Organization:
National Institutes of Health Clinical Center CC
Study Overview
Official Title:
Adaptation and Quality of Life Among Adults With Neurofibromatosis Type I
Status:
COMPLETED
Status Verified Date:
2015-11-27
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 predictors of adaptation and quality of life among adults affected with neurofibromatosis type 1 NF1 and autosomal dominant neurocutaneous condition NF1 carries a significant psychosocial burden for affected individuals Aspects of NF1 that are especially challenging include the unpredictable nature of the disease variability in severity of symptoms and medical complications uncertainty in progression and vulnerability to stigmatization due to the highly visible and often cosmetically disfiguring features of the condition The literature suggests that because of these and other challenges posed by NF1 affected individuals may struggle to adapt to their condition and consequently experience poor quality of life In this study Lazarus and Folkman s Tranactional Model of Stress and Coping is used as a framework to conceptualize adaptation and quality of life to NF1 A cross-sectional design with quantitative methodology will be employed to investigate the relationships of appraisals and stigma as predictors of adaptation and quality of life Adults affected with NF1 will be recruited via regional and national NF organizations and websites as well as through ongoing NIH clinical research protocols for NF1 Eligible participants will be invited to complete a web-based self-administered survey
Detailed Description:
This study aims to understand predictors of adaptation and quality of life among adults affected with neurofibromatosis type 1 NF1 and autosomal dominant neurocutaneous condition NF1 carries a significant psychosocial burden for affected individuals Aspects of NF1 that are especially challenging include the unpredictable nature of the disease variability in severity of symptoms and medical complications uncertainty in progression and vulnerability to stigmatization due to the highly visible and often cosmetically disfiguring features of the condition The literature suggests that because of these and other challenges posed by NF1 affected individuals may struggle to adapt to their condition and consequently experience poor quality of life In this study Lazarus and Folkman s Transactional Model of Stress and Coping is used as a framework to conceptualize adaptation and quality of life to NF1 A cross-sectional design with quantitative methodology will be employed to investigate the relationships of appraisals and stigma as predictors of adaptation and quality of life Adults affected with NF1 will be recruited via regional and national NF organizations and websites as well as through ongoing NIH clinical research protocols for NF1 Eligible participants will be invited to complete a web-based self-administered survey
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 |
|---|---|---|---|
| 08-HG-N144 | None | None | None |