CompletedNot Applicable

Health Needs of Patients With Kallmann Syndrome

Switzerland249 participantsStarted 2013-07

Plain-language summary

Kallmann syndrome (KS), also known as congenital hypogonadotropic hypogonadism (CHH), is a rare endocrine disorder that is characterized by failure to undergo puberty combined with infertility. KS/CHH patients face a number of psychosocial burdens related to delays in diagnosis, inadequate access to expert care, and lack of information about the condition. As such, there is some evidence to suggest that KS/CHH patients have unmet health needs. This study aims to identify the needs of patients and understand the issues that must be overcome to achieve improved health and quality of life.

Who can participate

Age range18 Years – 75 Years

SexALL

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AI-rewrites the medical criteria so a patient or caregiver can understand them. Always confirm with the trial site.

Inclusion Criteria: * Diagnosed with congenital hypogonadotropic hypogonadism: i.e. Kallmann syndrome or idiopathic hypogonadotropic hypogonadism * Primary language is English/capable of responding to a written questionnaire in English * Consenting to participate in the study Exclusion Criteria: * other diagnosis of hypogonadism: i.e. hypergonadotropic hypogonadism (Klinefelter syndrome), adult onset hypogonadism, etc.

What they're measuring

illness perception

Timeframe: baseline

depression symptoms

Timeframe: baseline

adherence to treatment

Timeframe: baseline

understandability and actionability of patient education materials

Timeframe: baeline

Trial details

NCT IDNCT01914172

SponsorCentre Hospitalier Universitaire Vaudois

Sponsor typeOTHER

Study typeOBSERVATIONAL

Primary completion2014-03

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