Below is a collection of publications that we’ve either written or contributed to;

Management of children and young people with idiopathic pituitary stalk thickening, central diabetes insipidus, or both: a national clinical practice consensus guideline – PubMed 

National UK guidelines for the management of paediatric craniopharyngioma – PubMed

Consensus guideline for the diagnosis and management of pituitary adenomas in childhood and adolescence: Part 1, general recommendations | Nature Reviews Endocrinology

Consensus guideline for the diagnosis and management of pituitary adenomas in childhood and adolescence: Part 2, specific diseases – PubMed 

Rare Endocrine Brain Tumours – CCLG Guidelines

Nature – Consensus guideline for the diagnosis and management of pituitary adenomas in childhood and adolescence: Part 1, specific diseases

Nature – Consensus guideline for the diagnosis and management of pituitary adenomas in childhood and adolescence: Part 2, specific diseases

Review – Hypothalamic obesity: from basic mechanisms to clinical perspectives

A 40-Year Cohort Study of Evolving Hypothalamic Dysfunction in Infants and Young Children (<3 years) with Optic Pathway Gliomas

The Lancet – National UK guidelines for the management of paediatric craniopharyngioma

Hypothalamic-Pituitary and Other Endocrine Surveillance Among Childhood Cancer Survivors

Frontiers – A new era for optic pathway glioma: A developmental brain tumor with life-long health consequences

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Recognising the burden of acquired hypothalamic obesity in patients with craniopharyngioma: cross-country insights from lived experiences to support integrated care across all life stages

As Success Life After Cure works with NHS England to define a bespoke care pathway for the (approximately) 32 children and young people diagnosed each year with very rare pituitary tumours, we are proud to have collaborated with specialist centres in Germany and the Netherlands to recruit patients to this important study.
This qualitative research, presented orally by Teun Schutte at our Annual Conference in London on 28th February and soon to be shared at the European Congress of Endocrinology, highlights the lifelong and often devastating impact of a non-cancerous tumour – craniopharyngioma.
It reinforces why more focused efforts to create a tailored care pathway, from diagnosis through to adulthood, are such an important goal for Success.
We are deeply grateful to all the beneficiaries who shared their experiences. We hear you, and we are working closely with NHS England to ensure this issue receives the attention it deserves.