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Natural History of Cherubism Observational Study

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. Identifier: NCT01916772
Recruitment Status : Completed
First Posted : August 6, 2013
Last Update Posted : January 10, 2017
Information provided by (Responsible Party):
The Cleveland Clinic

Brief Summary:
To observe the natural history of cherubism.

Condition or disease Intervention/treatment
Cherubism Other: no interventions

Detailed Description:
The investigators will take a history and examine patients with cherubism to determine the natural history of the disease. The investigators also may take skin or blood samples (IRB approved 7256) from patients to learn more about this disorder.

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Study Type : Observational
Actual Enrollment : 33 participants
Observational Model: Cohort
Time Perspective: Prospective
Official Title: Natural Hisotry of Cherubism Observational Study
Study Start Date : July 2013
Actual Primary Completion Date : September 2016
Actual Study Completion Date : September 2016

Group/Cohort Intervention/treatment
cherubism patients
no interventions
Other: no interventions
no interventions

Primary Outcome Measures :
  1. Disease progression [ Time Frame: 10 years ]
    We will take a history and examine patients with cherubism and look for disease progression.

Secondary Outcome Measures :
  1. patient growth [ Time Frame: 10 years ]
    We will measure height and weight

  2. bone abnormalities [ Time Frame: 10 years ]
    We will take panorex radiographs.

Biospecimen Retention:   Samples With DNA
We may take blood or skin samples.

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
Accepts Healthy Volunteers:   Yes
Sampling Method:   Non-Probability Sample
Study Population
We will see patients with cherubism

Inclusion Criteria:

patients with cherubism

Exclusion Criteria:

patients without cherubism

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): NCT01916772

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United States, Ohio
Cleveland Clinic
Cleveland, Ohio, United States, 44195
Sponsors and Collaborators
The Cleveland Clinic
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Principal Investigator: Steven Lietman The Cleveland Clinic
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Responsible Party: The Cleveland Clinic Identifier: NCT01916772    
Other Study ID Numbers: CCFO7256
First Posted: August 6, 2013    Key Record Dates
Last Update Posted: January 10, 2017
Last Verified: January 2017
Individual Participant Data (IPD) Sharing Statement:
Plan to Share IPD: No
Plan Description: There is no plan to share IPD.
Keywords provided by The Cleveland Clinic:
bone tumors
Additional relevant MeSH terms:
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Fibrous Dysplasia of Bone
Bone Diseases, Developmental
Bone Diseases
Musculoskeletal Diseases
Jaw Diseases
Stomatognathic Diseases
Maxillofacial Abnormalities
Craniofacial Abnormalities
Musculoskeletal Abnormalities
Congenital Abnormalities
Genetic Diseases, Inborn