Neoplasms

Nervous System Diseases

Diseases and Abnormalities at or Before Birth

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Symptoms and General Pathology

Skin and Connective Tissue Diseases

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Rare Diseases

Neurofibromatoses

Neurofibromatosis 1

Neurofibroma

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Neoplasms, Nerve Tissue

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Syndrome

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Nervous System Neoplasms

Peripheral Nervous System Neoplasms

Quality of Life

Neurofibromatosis

Neurofibromatosis Type 1

Barbara B Biesecker

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....

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.

Adaptation and Quality of Life Among Adults With Neurofibromatosis Type I

National Human Genome Research Institute (NHGRI)

Study title	NCT ID	Conditions	Interventions	Eligibility	Organization	Link
Adaptation and Quality of Life Among Adults With Neurofibromatosis Type I	NCT00684398	Neurofibromatos... Von Recklinghau... NF1		18 Years -	National Institutes of Health Clinical Center (CC)
Adaptation and Quality of Life Among Adults With Neurofibromatosis Type I	NCT00684398	Neurofibromatos... Von Recklinghau... NF1		18 Years -	National Institutes of Health Clinical Center (CC)

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