Registry for patients with thyroid hormone resistance

Deep Geno- and Phenotyping of Patients With Thyroid Hormone Resistance, a Register Study.

Observational Charite University, Berlin, Germany · NCT06566066

This study is collecting information from patients with thyroid hormone resistance to see how their specific gene mutations affect their health and improve diagnosis and treatment.

Quick facts

Study typeObservational
Enrollment200 (estimated)
SexAll
SponsorCharite University, Berlin, Germany Academic / other
Locations1 site (Berlin)
Trial IDNCT06566066 on ClinicalTrials.gov

What this trial studies

This registry aims to enhance the understanding of thyroid hormone resistance by collecting data on patients with mutations in the SLC16A2 and THRA genes. It focuses on improving diagnostic methods through the analysis of serum fT3/fT4 ratios and exploring the genomic regulation of these genes. The study will also investigate the phenotypic spectrum of patients affected by these conditions, which can lead to severe developmental and intellectual disabilities. By gathering comprehensive genetic and clinical information, the registry seeks to facilitate better diagnosis and management of affected individuals.

Who should consider this trial

Good fit: Ideal candidates include individuals with identified mutations in SLC16A2 or THRA and abnormal serum fT3/fT4 ratios.

Not a fit: Patients who have corrected or changed their molecular diagnosis or who withdraw consent will not benefit from this study.

Why it matters

Potential benefit: If successful, this registry could lead to improved diagnostic accuracy and better management strategies for patients with thyroid hormone resistance.

How similar studies have performed: While there is ongoing research in the field of thyroid hormone resistance, this specific registry approach is novel and aims to fill gaps in understanding the full spectrum of these conditions.

Eligibility criteria

Show full inclusion / exclusion criteria
Inclusion Criteria:

* Presence of a coding or non-coding mutation in SLC16A2
* Presence of a coding or non-coding mutation in THRA
* Abnormal fT3/fT4 ratio in the serum
* Written informed consent of the caregivers for participation in the register study

Exclusion Criteria:

* Withdrawal of consent
* Correction/change of the molecular diagnosis

Where this trial is running

Berlin

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 HypothyroidismGlobal Developmental DelayIntellectual DisabilityDystoniaMuscle HypotoniaSeizuresAllan-Herndon-Dudley SyndromeMicrocephalus
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.