Our rare endocrine tumour guidelines are intended to be a reference document for clinicians presented with the challenge of managing children and young people with rare endocrine tumour diagnoses.
Craniopharyngioma: Guidelines for the management of children and young people (CYP) aged up to 19 years
This guideline is intended to be a reference document for clinicians presented with the challenge of managing children and young adult patients (CYP) with craniopharyngioma up to the age of 19 years. It addresses the clinical assessment, diagnosis, treatment and follow-up of affected patients, informed by information gathered from peer reviewed scientific reports identified through a robust literature search. The expertise and experience of a range of nationally and internationally respected clinicians and scientists whose opinion has been sought as experts bring a clinically meaningful interpretation to these data, in a clear, pragmatic set of management guidelines.
Thickened pituitary stalk and/or central diabetes insipidus: Guideline for the investigation and management of Children and Young People aged up to 19 years
This guideline is intended to be a reference document for clinicians presented with the challenge of managing Children and Young People (CYP) up to the age of 19 years presenting with a Thickened Pituitary Stalk (TPS) and/or Central Diabetes Insipidus (CDI) where the aetiology is not apparent at presentation. Care of such patients differs in key aspects from that of adults, particularly in aetiology. This guideline seeks to identify and address these, in terms of presentation, clinical assessment, diagnosis, management, follow-up and prognosis of affected patients. Through robust literature searches and a Delphi consensus exercise, available scientific evidence and expert opinion has been brought together to produce a pragmatic set of decision making and management guidelines intended to optimise the quality of care of CYP with apparently idiopathic TPS and/or CDI, and form the basis for future audits of practice and outcomes.
Produced in association with the British Society for Paediatric Endocrinology and Diabetes and endorsed by the Royal College of Paediatrics and Child Health (RCPCH).
Paediatric differentiated thyroid carcinoma: UK national clinical practice consensus guideline
This guideline is written as a reference document for clinicians presented with the challenge of managing paediatric patients with differentiated thyroid carcinoma up to the age of 19 years. Care of paediatric patients with differentiated thyroid carcinoma differs in key aspects from that of adults, and there have been several recent developments in the care pathways for this condition; this guideline has sought to identify and attend to these areas. It addresses the presentation, clinical assessment, diagnosis, management (both surgical and medical), genetic counselling, follow up and prognosis of affected patients. The guideline development group formed of a multi-disciplinary panel of sub-speciality experts carried out a systematic primary literature review and Delphi consensus exercise. The guideline was developed in accordance with The Appraisal of Guidelines Research and Evaluation Instrument II criteria, with input from stakeholders including charities and patient groups. Based on scientific evidence and expert opinion, 58 recommendations have been collected to produce a clear, pragmatic set of management guidelines. It is intended as an evidence base for future optimal management and to improve the quality of clinical care of Paediatric patients with differentiated thyroid carcinoma.
Publication in Endocrine Related Cancer: Howard SR, Freeston S, Harrison B, Izatt L, Natu S, Newbold K, Pomplun S, Spoudeas HA, Wilne S, Kurzawinski TR, Gaze MN. Paediatric differentiated thyroid carcinoma: a UK National Clinical Practice Consensus Guideline. Endocr Relat Cancer. 2022 Sep 7;29(11):G1-G33. doi: 10.1530/ERC-22-0035. PMID: 35900783; PMCID: PMC9513650.
Guideline for the diagnosis and management of pituitary adenomas in childhood and adolescence
Tumours of the anterior part of the pituitary gland represent just 1% of all childhood (aged <15 years) intracranial neoplasms; yet they can confer high morbidity and little evidence and guidance is in place for their management.
Between 2014 and 2022, a multidisciplinary expert group systematically developed the first comprehensive clinical practice guideline for children and young people under the age of 19 years (hereafter referred to as CYP) presenting with a suspected pituitary adenoma to inform specialist care and improve health outcomes.
Through robust literature searches and a Delphi consensus exercise with an international Delphi consensus panel of experts, the available scientific evidence and expert opinions were consolidated into 74 recommendations.
While in many aspects the care for CYP is similar to that of adults, key differences exist, particularly in aetiology and presentation. CYP with suspected pituitary adenomas require careful clinical examination, appropriate hormonal workup, dedicated pituitary imaging and visual assessment. Consideration should be given to the potential for syndromic disease and genetic assessment. Multidisciplinary discussion at the local and national level can be key for management. Pituitary surgery should be performed in specialist centres. The collection of outcome data on novel modalities of medical treatment, surgical intervention and radiotherapy is essential for optimal future treatment.