Status:
ACTIVE_NOT_RECRUITING
Patient and Healthcare Professional Views on Genetic/Genomic Information and Testing
Lead Sponsor:
Boston College
Collaborating Sponsors:
Massachusetts General Hospital
Conditions:
Hypogonadism, Hypogonadotropic
Kallmann Syndrome
Eligibility:
All Genders
18-70 years
Brief Summary
Technologic advances (i.e. next generation sequencing technologies and novel bioinformatics approaches) have been drivers of scientific discovery and have deepened our understanding of the genetics an...
Detailed Description
The focus of this study is to better understand perspectives on genetic testing. The study will collect and analyze both quantitative and qualitative data form healthcare professionals as well as pati...
Eligibility Criteria
Inclusion
- self-identified as having been diagnosed with either normosmic hypogonadotropic hypogonadism (HH) or Kallmann syndrome (KS)
- between the ages of 18-70 years
- primary language is English/capable of responding to a written questionnaire in English
- has lived in the United states for 5 years or longer
- checking the opt-in electronic consent
Exclusion
- other diagnosis of hypogonadism i.e. Klinefelter syndrome, or adult-onset hypogonadotropic hypogonadism
- outside the stated age range
Key Trial Info
Start Date :
March 22 2018
Trial Type :
OBSERVATIONAL
Allocation :
ACTUAL
End Date :
December 31 2025
Estimated Enrollment :
227 Patients enrolled
Trial Details
Trial ID
NCT04733274
Start Date
March 22 2018
End Date
December 31 2025
Last Update
February 4 2025
Active Locations (2)
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1
Massachusetts General Hospital
Boston, Massachusetts, United States, 02114
2
Boston College
Chestnut Hill, Massachusetts, United States, 02467