Observational studyPituitary2025
Patients with langerhans cell histiocytosis and hypothalamic-pituitary involvement: insights from the HEROS study cohort.
Observational study in Pituitary, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. An erratum has been issued. Cited by 4 papers.
What it found
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Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
4 citing papers in PubMed.
- Intracranial germ cell tumors: an underrecognized diagnostic consideration in adults with sellar/suprasellar lesions.Journal of neuro-oncology · 2026Article
- Review
- Progressive Cerebellar Dysfunction, Pituitary Insufficiency, and Severe Skeletal Fragility in Adult Survivorship of Childhood Multisystem Langerhans Cell Histiocytosis: A Case Report.Clinical case reports · 2026Article
- Clinical utility of copeptin in histiocytosis-associated arginine vasopressin deficiency: a report of three cases.Annals of hematology · 2026Article
Corrections and comments
- Erratum issued
Authors and funding
13 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
purposeLangerhans cell histiocytosis (LCH) is a rare disease involving multiple organs, including the endocrine system. This multicenter study aimed to characterize patients with hypothalamic- pituitary involvement in LCH.
methodsThe Hypopituitarism European NeuroEndocrine Association (ENEA) Rare Etiologies Observational Study (HEROS) platform invited ENEA members to include patients with rare pituitary diseases like LCH. Demographic data, presenting symptoms, hormonal profile, imaging tests, treatment, and prognosis were retrieved.
resultsForty-eight patients (58% males) were included. Age at diagnosis was 22 ± 16.1 years, with 58% diagnosed as adults (> 18 years). The mean follow-up was 15.8 ± 10.6 years, 46% of the patients initially presented with bone lesions, 42% with lung involvement, and five were incidentally diagnosed. At diagnosis, 69% of the patients had arginine vasopressin deficiency (AVD), 42% had central hypogonadism, 25% hypothyroidism, and 12.5% hypocortisolism. Magnetic resonance imaging (MRI) was available in 41 patients, 73% of whom had pathology of the posterior pituitary/pituitary stalk. Visual disturbances were reported in only one patient. Diagnosis was histopathologically confirmed in all patients, mainly from extra-pituitary lesions. Transcranial biopsy was performed in five patients, and two underwent transsphenoidal intervention. During follow-up, 27% of the patients developed new AVD and five acquired new anterior pituitary hormone deficiency. There was no disease-related mortality during follow-up.
conclusionsPatients 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.
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