Understanding inherited reproductive disorders

The Molecular Basis of Inherited Reproductive Disorders

Observational National Institutes of Health Clinical Center (CC) · NCT01500447

This study looks at how certain reproductive disorders, like delayed or early puberty, might run in families by testing blood samples and gathering information from people who have these issues.

Quick facts

Study typeObservational
Enrollment850 (estimated)
Ages6 Weeks to 120 Years
SexAll
SponsorNational Institutes of Health Clinical Center (CC) NIH
Locations2 sites (Bethesda, Maryland and 1 other locations)
Trial IDNCT01500447 on ClinicalTrials.gov

What this trial studies

This observational study aims to investigate how reproductive system disorders, such as hypogonadotropic hypogonadism and abnormal puberty timing, may be inherited. Participants will provide blood samples and complete questionnaires about their symptoms, along with a scratch-and-sniff test. The study focuses on individuals with delayed, absent, or early puberty, as well as those with hormonal issues that develop later in life. By studying these conditions, researchers hope to uncover the genetic factors involved in reproductive disorders.

Who should consider this trial

Good fit: Ideal candidates include individuals experiencing delayed or absent puberty, early puberty, or hormonal issues following normal puberty.

Not a fit: Patients with reproductive disorders not related to genetic factors may not benefit from this study.

Why it matters

Potential benefit: If successful, this study could lead to better understanding and management of inherited reproductive disorders, improving patient outcomes.

How similar studies have performed: Other studies have shown success in understanding genetic factors in reproductive disorders, making this approach promising.

Eligibility criteria

Show full inclusion / exclusion criteria
* INCLUSION CRITERIA:

The essential inclusion criteria include:

1. failure to go through a normal, age-appropriate, spontaneous puberty and low sex steroid levels in the setting of low/normal gonadotropins (due to substantial variability among patient presentations, this will be based on the clinical judgement of the Investigator), or
2. abnormally early development of puberty, or
3. normal puberty with subsequent development of low gonadotropin levels, or
4. individuals with features indicating an increased risk of hypogonadotropic hypogonadism.
5. Family members: both affected and unaffected family members are strongly encouraged to participate.

EXCLUSION CRITERIA:

Since hypogonadotropic hypogonadism is a rare condition, this protocol remains open to enrollment so that we may study all subjects that are both qualified and interested in participating.

Because HH represents a spectrum, where associated clinical findings may provide phenotypic clues to the assessment of inheritability and underlying physiology, exclusion criteria are very limited:

* Patients who have additional pituitary deficiencies, effectively ruling out isolated GnRH deficiency, whether these deficiencies are congenital or acquired (e.g. secondary to malignancy, infection, or irradiation).
* Patients who are taking medications known to affect GnRH secretion, such as corticosteroids or continuous opiate administration (or were taking them at the time of diagnosis).

Where this trial is running

Bethesda, Maryland and 1 other locations

Study contacts

How to participate

  1. Review the eligibility criteria above with your treating physician.
  2. Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
  3. Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.
Conditions Genetic DisorderInfertilityHypogonadismAmenorrheaHypogonadotropic HypogonadismKallmann SyndromeDelayed PubertyHypothalamic Amenorrhea
Last reviewed 2026-06-15 by the Find a Trial editorial team. Information on this page is for educational purposes and is not medical advice. Always consult qualified healthcare professionals about clinical trial participation.