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Sponsors and Collaborators: |
Shriners Hospitals for Children University of Utah |
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Information provided by: | Shriners Hospitals for Children |
ClinicalTrials.gov Identifier: | NCT00303368 |
The study is a multicenter four-year outcome study of the natural history of tibial dysplasia in patients with NF1 and selected patients without NF1. We will obtain information on the natural history, burden, functional and health status, health-related quality of life, and surgical interventions/outcomes of tibial dysplasia. The project will also establish a Core Facility (NOCF) for tissue samples for future studies.
Condition |
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Neurofibromatosis Type 1 Tibial Dysplasia |
Study Type: | Observational |
Official Title: | Multicenter Study of Tibial Dysplasia in Neurofibromatosis Type I (NF1) Patients |
If the enrollee's private physician includes surgery in the management of his/her disorder, and if tissue is removed to be discarded, permission is obtained to store the specimen in a tissue repository for future research.
Estimated Enrollment: | 420 |
Study Start Date: | March 2004 |
Estimated Study Completion Date: | December 2008 |
The three specific aims of this study are:
The results of this project will provide a rational basis for future clinical and therapeutic trials.
Genders Eligible for Study: | Both |
Accepts Healthy Volunteers: | No |
Sampling Method: | Non-Probability Sample |
Adults and children with NF1, with or without Tibial Dysplasia, ages 3+ and individuals ages birth through 18 with Tibial Dysplasia, with or without NF1.
Inclusion Criteria:
Aim 1:
Exclusion Criteria:
Contact: Jeanne A Siebert, MBA | 801-536-3601 | jsiebert@shrinenet.org |
Contact: Susan J Geyer, BA | 801-536-3561 | sgeyer@shrinenet.org |
United States, Utah | |
Shriners Hospitals for Children, Intermountain Hospital | Recruiting |
Salt Lake City, Utah, United States, 84103 | |
Contact: Jeanne A Siebert, MBA 801-536-3601 jsiebert@shrinenet.org | |
Contact: Susan J Geyer, BA 801-536-3561 sgeyer@shrinenet.org | |
Principal Investigator: Jacques D'Astous, MD |
Principal Investigator: | John C Carey, MD, MPH | University of Utah, Health Science Center |
Responsible Party: | Shriners Hospitals for Children ( John C. Carey, MD ) |
Study ID Numbers: | 9165 |
Study First Received: | March 14, 2006 |
Last Updated: | May 20, 2008 |
ClinicalTrials.gov Identifier: | NCT00303368 |
Health Authority: | United States: Institutional Review Board |
Neurofibromatosis (NF1) Tibial Dysplasia (TD) |
Heredodegenerative Disorders, Nervous System Neoplastic Syndromes, Hereditary Neuromuscular Diseases Genetic Diseases, Inborn Neurofibroma Peripheral Nervous System Diseases |
Neurofibromatoses Neurodegenerative Diseases Neurofibromatosis type 1 Nerve Sheath Neoplasms Neurofibromatosis 1 Neurocutaneous Syndromes |
Neoplasms Neoplasms by Histologic Type Nervous System Diseases Neoplasms, Nerve Tissue |