I am forwarding a e-mail from a research team based at Pennsylvania State University in the USA. They are working with the KS team at Boston with a survey of KS / CHH patients. They hope to see if there are any common factors patients with KS / CHH experience with their diagnosis and treatment.
The survey is open to everybody, even families of patients with KS / CHH. This hopefully will build on and complement the survey done last year.
The questionnaire is totally anonymous and will take about 45 mins to complete on line. It is a very personal and intense set of questions. There is also a series of visual and audio questions. I think it is a well designed survey. While some of the questions are deeply personal they cover a lot of topics that come up in discussions I have with fellow patients.
If you wish to participate or wish to know more information you can e-mail Lauramarie on the e-mail address below.
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We are currently seeking research participants who have been diagnosed with idiopathic hypogonadotropic hypogonadism (IHH), including Kallmann Syndrome (KS), for an online study regarding hormone replacement therapy and psychological well-being.
To participate, you must be 18 to 65 years old. Although you may wish to participate out of a desire to promote this research, you will also be compensated for your participation (about 45 minutes online) with $25.
We would also like relatives of IHH participants (siblings or first cousins) to participate in the study. If you have IHH (including KS) and have a relative who might also be interested in participating, please pass this information on to them.
You may still participate even if you do not have a relative who is willing to participate in this study.
For more information about participating in this study, or to sign up, please contact Lauramarie at lep161@psu.edu
If you have any general questions about this project or our overall research goals, please contact Dr. David Puts at dap27@psu.edu or visitwww.putslab.psu.edu/research.html.
