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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Page 1 of 1 (2 locations)

1

Massachusetts General Hospital

Boston, Massachusetts, United States, 02114

2

Boston College

Chestnut Hill, Massachusetts, United States, 02467