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Note: This record shows only the 20 elements of the WHO Trial Registration Data Set. To view changes that have been made to the source record, or for additional information about this trial, click on the URL below to go to the source record in the primary register.
Register: ClinicalTrials.gov
Last refreshed on: 8 April 2013
Main ID:  NCT01369953
Date of registration: 08/06/2011
Primary sponsor: National Human Genome Research Institute (NHGRI)
Public title: Informed Consent for Whole Genome Sequencing: Ideals and Norms Referenced by Early Participants
Scientific title: Informed Consent for Whole Genome Sequencing: Civic Ideals and Social Norms Referenced by Early Participants
Date of first enrolment: May 2011
Target sample size: 40
Recruitment status: Completed
URL:  http://clinicaltrials.gov/show/NCT01369953
Study type:  Observational
Study design:  Time Perspective: Prospective  
Countries of recruitment
United States
Contacts
Name:   Barbara B Biesecker
Address: 
Telephone:
Email:
Affiliation:  National Human Genome Research Institute (NHGRI)
Key inclusion & exclusion criteria

- INCLUSION CRITERIA:

- Adult over 18 years of age

- English-speaking

- Individuals consented to participate in either the NIH's ClinSeq or Whole Genome
Medical Sequencing for Gene Discovery protocols

EXCLUSION CRITERIA:

- Children under 18 years of age

- Non-English speakers

- Individuals consented to participate in either the NIH's ClinSeq or Whole Genome
Medical Sequencing for Gene Discovery protocols more than 8 weeks prior to their
recruitment for this study.



Age minimum: 18 Years
Age maximum: 65 Years
Gender: Both
Health Condition(s) or Problem(s) studied
Coffin - Sins Syndrome
Coronary Artery Disease
Dubouitz Syndrome
Familial Isolated Hyperparathyroidism
Proteus Syndrome
Intervention(s)
Primary Outcome(s)
Secondary Outcome(s)
Secondary ID(s)
11-HG-N185
999911185
Source(s) of Monetary Support
Please refer to primary and secondary sponsors
Secondary Sponsor(s)
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