Genetic Endocrine Tumour Syndromes
Genetic endocrine tumours are rare, complex, muli-organ conditions that are dominantly inherited, and manifest throughout childhood and adult life.
Considerable geographical variation is observed in the prevalence of these conditions.
The endocrine tumour syndromes require lifelong surveillance and management. Ideally, care is provided in a family focused service, facilitating focused expertise, knowledge exchange between practitioners and optimal transition from paediatric to adult services. Patients and families require expert support and care to maintain engagement over the course of a their lifetime.
The ERN of genetic endocrine tumours will bring together expert clinicians, scientists and patient representatives to prioritise clinical and research themes to be delivered collaboratively across the network. The development of a clinical database will be at the heart of programmes and interventions to be tracked over time and between centers. This database will also be used to inform feasibility studies and identification of patients for researchers.