National Study of Adrenal Tumours (NSAT)

Society for Endocrinology

Status: Invitation-only

Conditions: Adrenocorticol Cancer (ACC); Adrenal Tumours; Pheochromocytoma and Paraganglioma (PPGL)

Study type: Observational

Funder types: Other

Identifiers

NCT06870396

NSAT2024.01

Details and patient eligibility

About

This is a study putting together large numbers of patients with or without a hereditary risk of adrenal tumours including tumours such as adrenocortical carcinoma and phaeochromocytoma/paraganglioma. The purpose is to answer questions about the survival of patients with these rare tumours and to do this, we will collect information on diagnosis and management of these tumours. This data will be best assessed by combing these rare cases at a national level recruiting from centres throughout UK and Ireland. The information will be confidential and stored in a secure platform.

Patients will be approached for consent to gather their data by their local consultants and patients will have the choice to participate or decline participation, which will not affect their standard of care treatment.

Enrollment: 300 estimated patients

Sex: All

Ages: 18+ years old

Volunteers: No Healthy Volunteers

Inclusion criteria

1. Patients with a confirmed diagnosis of phaeochromocytoma or paraganglioma or adrenocortical tumour based on histology and or biochemical testing including plasma or urine metanephrine's or a urine steroid profile and confirmatory imaging tests or patients with a confirmed pathogenic variant in a known PPGL predisposition gene
2. Patient is willing and able to give informed consent for the participation in the study.
3. Male or female, and over the age of 18.
4. Patient, in the investigator's opinion, is able and willing to comply with all the study requirements.
5. Patients held on local hospital audit notes who have had a diagnosis of phaeochromocytoma or paraganglioma or adrenocortical tumour based on histology and or biochemical testing including plasma or urine metanephrine's or a urine steroid profile and confirmatory imaging tests or patients with a confirmed pathogenic variant in a known PPGL predisposition gene who are now deceased and have been deceased prior to the start of the study.

Exclusion criteria

1. Alive patients unable to give informed consent will not be recruited
2. Patients with an unconfirmed diagnosis of phaeochromocytoma or paraganglioma or adrenocortical tumour based on histology and or biochemical testing including plasma or urine metanephrine's or a urine steroid profile and confirmatory imaging tests or patients with unconfirmed pathogenic variant in a known PPGL predisposition gene