Adaptation and Quality of Life Among Adults With Neurofibromatosis Type I
![]() |
The safety and scientific validity of this study is the responsibility of the study sponsor and investigators. Listing a study does not mean it has been evaluated by the U.S. Federal Government. Read our disclaimer for details. |
ClinicalTrials.gov Identifier: NCT00684398 |
Recruitment Status
:
Completed
First Posted
: May 26, 2008
Last Update Posted
: April 20, 2018
|
- Study Details
- Tabular View
- No Results Posted
- Disclaimer
- How to Read a Study Record
Condition or disease |
---|
Neurofibromatosis Type 1 Von Recklinghausen Disease NF1 |
Study Type : | Observational |
Actual Enrollment : | 645 participants |
Time Perspective: | Prospective |
Official Title: | Adaptation and Quality of Life Among Adults With Neurofibromatosis Type I |
Study Start Date : | May 15, 2008 |
Study Completion Date : | November 27, 2015 |


Choosing to participate in a study is an important personal decision. Talk with your doctor and family members or friends about deciding to join a study. To learn more about this study, you or your doctor may contact the study research staff using the contacts provided below. For general information, Learn About Clinical Studies.
Ages Eligible for Study: | 18 Years and older (Adult, Senior) |
Sexes Eligible for Study: | All |
Accepts Healthy Volunteers: | No |
- INCLUSION CRITERIA:
Adult men and women at least 18 years of age who self-report as having NF1.
Participants must be able to read and write in English.
Individuals of all ethnic, religious, socioeconomic, and educational backgrounds and from a variety of geographic locations in the United States will be included.
EXCLUSION CRITERIA:
Children under the age of 18.
Inability to read and write in English.

To learn more about this study, you or your doctor may contact the study research staff using the contact information provided by the sponsor.
Please refer to this study by its ClinicalTrials.gov identifier (NCT number): NCT00684398
United States, Maryland | |
National Human Genome Research Institute (NHGRI), 9000 Rockville Pike | |
Bethesda, Maryland, United States, 20892 |
Principal Investigator: | Barbara B Biesecker | National Human Genome Research Institute (NHGRI) |
Publications:
Responsible Party: | National Human Genome Research Institute (NHGRI) |
ClinicalTrials.gov Identifier: | NCT00684398 History of Changes |
Other Study ID Numbers: |
999908144 08-HG-N144 |
First Posted: | May 26, 2008 Key Record Dates |
Last Update Posted: | April 20, 2018 |
Last Verified: | November 27, 2015 |
Keywords provided by National Institutes of Health Clinical Center (CC) ( National Human Genome Research Institute (NHGRI) ):
Neurofibromatosis Type 1 Quality of Life Adaptation |
Stress and Coping Model NF1 Survey |
Additional relevant MeSH terms:
Neurofibromatoses Neurofibromatosis 1 Neurofibroma Nerve Sheath Neoplasms Neoplasms, Nerve Tissue Neoplasms by Histologic Type Neoplasms Neoplastic Syndromes, Hereditary Neurocutaneous Syndromes |
Nervous System Diseases Heredodegenerative Disorders, Nervous System Neurodegenerative Diseases Genetic Diseases, Inborn Peripheral Nervous System Diseases Neuromuscular Diseases Peripheral Nervous System Neoplasms Nervous System Neoplasms |