Patient and Healthcare Professional Views on Genetic/Genomic Information and Testing
Running, not enrolling
Conditions studied: Hypogonadism, Hypogonadotropic, Kallmann Syndrome
In brief
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 and genomics of health and disease. In parallel, the falling cost of sequencing has led to screening moving from specialty clinics into the primary care setting. However, our ability to help patients and families understand these technologies and related genetic health literacy issues lag behind. These factors pose a number of questions and challenges for clinicians including: how can we best present complex genetic/genomic information to patients to ensure that patients understand the information and can make informed decisions? What are the specific information and support needs of patients and families to be able to make decisions that are in line with their values? In collaboration with investigators from the Harvard Reproductive Endocrine Sciences Center at the Massachusetts General Hospital, this project broadly aims to examine patient understanding and factors affecting decisions surrounding genetic testing. Using the paradigm of a rare genetic disorder (isolated gonadotropin releasing hormone \[GnRH\] deficiency - hypogonadotropic hypogonadism/Kallmann syndrome \[HH/KS\]) we will examine the views and perspectives of patients and healthcare professionals alike regarding genetic/genomic information and testing with the intention of identifying patient-centered responses to these unmet needs and challenges.
Key facts
- Study ID
- NCT04733274
- Run by
- Boston College
- People needed
- 227
- Starts
- 2018-03-22
- Expected to finish
- 2025-12-31
- Last updated by the study team
- 2025-02-04
Who can join
Age: 18 and older, up to 70. Sex: any. Healthy volunteers: not accepted.
You may qualify if…
- 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
You may not qualify if…
- other diagnosis of hypogonadism i.e. Klinefelter syndrome, or adult-onset hypogonadotropic hypogonadism
- outside the stated age range
Where it is running
- Massachusetts General Hospital — Boston, Massachusetts, United States
- Boston College — Chestnut Hill, Massachusetts, United States
Full record on ClinicalTrials.gov
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