Last reviewed · How we verify
NCT00684398
Adaptation and Quality of Life Among Adults With Neurofibromatosis Type I
trial in Neurofibromatosis Type 1 in 645 participants. Completed in 27 November 2015.
Quick facts
| Lead sponsor | National Human Genome Research Institute (NHGRI) |
|---|---|
| Status | Completed |
| Study type | OBSERVATIONAL |
| Enrollment | 645 |
| Start date | 15 May 2008 |
| Estimated completion | 27 November 2015 |
| Sites | 1 location across United States |
Conditions studied
- Neurofibromatosis Type 1 — all drugs for Neurofibromatosis Type 1 →
- Von Recklinghausen Disease — all drugs for Von Recklinghausen Disease →
- NF1 — all drugs for NF1 →
Sponsor
National Human Genome Research Institute (NHGRI)
Who can join
18 and older, any sex, with Neurofibromatosis Type 1 or Von Recklinghausen Disease. Patients with the condition only — healthy volunteers not accepted.
Sponsor's own 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 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....
Publications & conference data
No peer-reviewed publications indexed yet for this trial. Completed trials usually publish results within 12-18 months.
Verify or expand the search:
- PubMed search for NCT00684398
- Europe PMC full search
- ASCO Meeting Library
- ESMO Meeting Library
- bioRxiv preprints
- medRxiv preprints
- Google Scholar
Related trials
Other recruiting trials for Neurofibromatosis Type 1
Currently open trials in the same condition.
- NCT06507748 — A Study to Evaluate the Feasibility of a Physiologic Biomarker to Assess Pain and Other Sensory Problems Using Pupillome · NA · recruiting
- NCT07221331 — Prevalence, Clinical Characteristics, Progression, and Management of Neurofibromatosis Type 1 in Egypt (NF1-Egy) · recruiting
- NCT06880991 — Development of Patient-Reported Outcome Measures Assessing Tumor Visibility and Appearance Concerns in Neurofibromatosis · recruiting
- NCT05388370 — PASS of Paediatric Patients Initiating Selumetinib · active not recruiting
- NCT05309668 — Pharmacokinetics, Safety and Efficacy of the Selumetinib Granule Formulation in Children Aged ≥1 to <7 Years With NF1-re · Phase 1, PHASE2 · active not recruiting
Other National Human Genome Research Institute (NHGRI) trials
Trials by the same sponsor.
- NCT05657405 — Observational Study of Advanced Data Analytics in Genetic Conditions · recruiting
- NCT06948110 — Deciphering the Genetic Architecture of Autoimmune Diseases · recruiting
- NCT06664814 — An Open-Label Phase 2 Study of N-Acetyl-D-Mannosamine (ManNAc) in Subjects With Primary Focal Segmental Glomeruloscleros · Phase 2 · recruiting
- NCT06595940 — Genetic Analysis of Uncommon Disease Presentations in Non-US Populations · recruiting
- NCT06552754 — Cybersickness Prevention and Mitigation in Virtual Reality for Healthy Volunteers · NA · recruiting
Verify against primary sources
- ClinicalTrials.gov — authoritative US registry record
- WHO ICTRP — international registry index
- EU Clinical Trials Register
- Sponsor press releases (Google)
- Trial protocol + status: ClinicalTrials.gov NCT00684398 (US National Library of Medicine, public domain)
- Drug + disease cross-links: matched in real time against Drug Landscape's normalised drug + company + condition tables
- Sponsor: as reported to ClinicalTrials.gov by National Human Genome Research Institute (NHGRI)
- Last refreshed: 16 December 2019
Drug Landscape aggregates and links these public records for informational use only. Always verify against the primary source before clinical or regulatory decisions. Canonical URL: https://druglandscape.com/trial/NCT00684398.
Primary sources · FDA · ClinicalTrials.gov · EMA · SEC EDGAR · ChEMBL · Wikidata · full sourcing