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The Neurofibromatosis-associated Tumor Biobank

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. Know the risks and potential benefits of clinical studies and talk to your health care provider before participating. Read our disclaimer for details. Identifier: NCT03359304
Recruitment Status : Not yet recruiting
First Posted : December 2, 2017
Last Update Posted : December 2, 2017
Information provided by (Responsible Party):
Ren tingting, Peking University People's Hospital

Brief Summary:
Neurofibromatosis-associated Tumor is very rare bone tumor. The investigator set up the biobank to ensure every patient has the chance to participate in future research

Condition or disease

Detailed Description:

Samples of blood and other stored material such as slides,frozen tissues or leftover diagnostic material.

Questionnaire information, including health history, growth and development, physical activity and family medical history information.

If patients have been diagnosed with a neurofibromatosis-associated tumor or another condition the investigator is interested in, the investigator will ask the patient to release medical record information relating to diagnosis and treatment of neurofibromatosis-associated tumor, other cancers, blood disorders, and similar conditions.

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Study Type : Observational
Estimated Enrollment : 300 participants
Observational Model: Family-Based
Time Perspective: Prospective
Official Title: Establishment of Neurofibromatosis-associated Tumours Biobank for Future Genomic-based Research Aiming at Improved Outcome Prediction
Estimated Study Start Date : March 1, 2018
Estimated Primary Completion Date : March 1, 2023
Estimated Study Completion Date : March 1, 2028

Primary Outcome Measures :
  1. Detected NF-1 gene expression pattern in neurofibromatosis-asociated tumor [ Time Frame: 3 years ]
    To examine the neurofibromatosis type 1(NF-1) gene expression of the patients with neurofibromatosis-associated tumor

Biospecimen Retention:   Samples With DNA
The investigator will collect specimen and blood. If the investigator finds out that the sample doesn't have enough cells to be useful, the investigator may call for an additional sample.

Information from the National Library of Medicine

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.

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Ages Eligible for Study:   Child, Adult, Older Adult
Sexes Eligible for Study:   All
Sampling Method:   Non-Probability Sample
Study Population

Inclusion Criteria:

Proband Inclusion criteria: A diagnosis or suspected diagnosis of neurofibromatosis-associated tumor Family member inclusion criteria: Biological parents and full biological siblings of a case diagnosed with neurofibromatosis-associated tumor

Exclusion Criteria:


Information from the National Library of Medicine

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 identifier (NCT number): NCT03359304

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Contact: Kuisheng Liu, phD +8601088324471

Sponsors and Collaborators
Ren tingting
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Principal Investigator: Tingting Ren, phD Peking University People's Hospital

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Responsible Party: Ren tingting, Musculoskeletal Tumor Center, Peking University People's Hospital Identifier: NCT03359304    
Other Study ID Numbers: PKU-MPNST
First Posted: December 2, 2017    Key Record Dates
Last Update Posted: December 2, 2017
Last Verified: November 2017
Individual Participant Data (IPD) Sharing Statement:
Plan to Share IPD: No

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Studies a U.S. FDA-regulated Device Product: No
Keywords provided by Ren tingting, Peking University People's Hospital:
bone tumor
Additional relevant MeSH terms:
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Neurofibromatosis 1
Nerve Sheath Neoplasms
Neoplasms, Nerve Tissue
Neoplasms by Histologic Type
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