Influence of hormonal status in hereditary hemorrhagic telangiectasia – analysis of an online patient questionnaire - Report - MDSpire

Influence of hormonal status in hereditary hemorrhagic telangiectasia – analysis of an online patient questionnaire

  • By

  • Freya Droege

  • Kruthika Thangavelu

  • Angela Koeninger

  • Eva Maria Huessler

  • Stephan Lang

  • Boris A. Stuck

  • Urban W. Geisthoff

  • March 20, 2026

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Clinical Report: Impact of Hormonal Factors on Hereditary Hemorrhagic Telangiectasia

Overview

This study investigates the influence of hormonal factors on the severity of epistaxis in patients with hereditary hemorrhagic telangiectasia (HHT) through an online patient survey.

Background

Hereditary hemorrhagic telangiectasia (HHT) is a rare genetic disorder characterized by vascular malformations leading to recurrent bleeding, primarily epistaxis. Understanding the role of hormonal factors in HHT is crucial, as empirical evidence remains limited.

Data Highlights

No numerical data or trial data provided in the source material.

Key Findings

  • The study utilized an online questionnaire to assess hormonal influences on epistaxis severity in HHT patients.
  • Participants reported variations in disease severity during different hormonal phases, including puberty, menstruation, pregnancy, and menopause.
  • The survey aimed to compare findings between female and male patients regarding hormonal impacts.
  • Statistical analyses included relative risk and mean differences to evaluate symptom changes across different life stages.
  • Evidence linking hormonal levels to epistaxis severity in HHT remains to be established.

Clinical Implications

The findings may guide clinicians in considering hormonal status when managing epistaxis in HHT patients, particularly in women. Further research is needed to establish definitive links between hormonal fluctuations and disease severity.

Conclusion

Current evidence is insufficient to draw firm conclusions about the hormonal factors affecting epistaxis in HHT.

Related Resources & Content

  1. Hereditary Hemorrhagic Telangiectasia - GeneReviews® - NCBI Bookshelf, 2026 -- Overview and Management
  2. Standardization of Terminology, Definitions, and Outcome Criteria for Bleeding in Hereditary Hemorrhagic Telangiectasia: International Consensus Report - PubMed, 2025 -- Consensus Report
  3. The effect of systemic bevacizumab on epistaxis-related outcomes in hereditary hemorrhagic telangiectasia: a systematic review and meta-analysis. | Monash Health, 2025 -- Systematic Review
  4. Drugs - Real World Outcomes — Patient Characteristics and Treatment Approaches for Hereditary Angioedema Managed with Lanadelumab: A Retrospective Chart Analysis from the United States
  5. Assessment of Arterial Circulation in Healthy Subjects Versus Individuals with Hemorrhoidal Disease: A Pathophysiological Study Utilizing Doppler Ultrasound
  6. The Journal of Clinical Endocrinology & Metabolism — The Relationship Between Endogenous Estrogen Levels and Hypertension Risk: Findings from a Two-Decade Population Cohort Study
  7. The Journal of Clinical Endocrinology & Metabolism — Indicators of Possible Androgen Excess Throughout the Lifespan in a Digital Cohort Study from the United States
  8. Do’s and Don’ts Factsheets for Rare Vascular Disease Care in For Frequent Situations
  9. Hereditary Hemorrhagic Telangiectasia - GeneReviews® - NCBI Bookshelf
  10. Standardization of Terminology, Definitions, and Outcome Criteria for Bleeding in Hereditary Hemorrhagic Telangiectasia: International Consensus Report - PubMed
  11. The effect of systemic bevacizumab on epistaxis-related outcomes in hereditary hemorrhagic telangiectasia: a systematic review and meta-analysis. | Monash Health
  12. Pomalidomide for Epistaxis in Hereditary Hemorrhagic Telangiectasia | New England Journal of Medicine
  13. Influence of hormonal status in hereditary hemorrhagic telangiectasia - analysis of an online patient questionnaire - PubMed

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