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KS / CHH online survey.

August 7, 2014

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.

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

If you have any general questions about this project or our overall research goals, please contact Dr. David Puts at or visit

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