Patients with langerhans cell histiocytosis and hypothalamic-pituitary involvement: insights from the HEROS study cohort
An erratum to this article was published (Pituitary, 25 Mar 2026 ↗)
Authors' conclusion
Patients with LCH and hypothalamic-pituitary involvement remained clinically stable during long-term follow-up. However, new hormonal deficits may develop years after diagnosis, with most patients ultimately experiencing AVD.
Study context
- Population
- Patients with Langerhans cell histiocytosis (LCH) and hypothalamic-pituitary involvement, included by European NeuroEndocrine Association (ENEA) members58% males
- Participants
- 48 patients
- Outcome
- Hormonal deficiencies at diagnosis
- Follow-up
- At diagnosis
Methodological detailsmulticenter, HEROS platform
- Multicenter
- HEROS platform
Main finding
As reported in the abstract
- AVP deficiency (arginine vasopressin deficiency (AVD))
- 69%
- Central hypogonadism
- 42%
- Hypothyroidism
- 25%
- Hypocortisolism
- 12.5%
- Posterior pituitary/pituitary stalk pathology on magnetic resonance imaging (MRI) (41 with MRI)
- 73%
Observational data: associations, not effects.
Further findings
Presentation at diagnosis
- Initial presentation with bone lesions
- 46%
- Initial presentation with lung involvement
- 42%
- Incidentally diagnosed
- 5 patients
- Visual disturbances
- 1 patient
MRI findings
- MRI available
- 41 patients
- Pathology of posterior pituitary/pituitary stalk
- 73%
Course during follow-up · mean follow-up 15.8 ± 10.6 years
- Developed new AVD
- 27%
- Acquired new anterior pituitary hormone deficiency
- 5 patients
- There was no disease-related mortality during follow-up
Diagnostic procedures
- Histopathological confirmation, mainly from extra-pituitary lesions
- all patients
- Transcranial biopsy
- 5 patients
- Transsphenoidal intervention
- 2 patients
Original publication
Patients with langerhans cell histiocytosis and hypothalamic-pituitary involvement: insights from the HEROS study cohort. Pituitary. Published 26 September 2025. doi:10.
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