National Study of Adrenal Tumours (NSAT)

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.

Study Overview

• Status: Enrolling by invitation
• Conditions: Adrenal Tumours; Pheochromocytoma and Paraganglioma (PPGL); Adrenocorticol Cancer (ACC)

• Study Type: Observational
• Enrollment (Estimated): 300

Contacts and Locations

Study Locations

• United Kingdom
  • UK
    • Cambridge, UK, United Kingdom
      • Cambridge NHS

Participation Criteria

Eligibility Criteria

• Ages Eligible for Study: Adult; Older Adult
• Accepts Healthy Volunteers: No

• Sampling Method: Non-Probability Sample

Study Population

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

Description

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

Study Plan

How is the study designed?

What is the study measuring?

Primary Outcome Measures

Outcome Measure	Measure Description	Time Frame
review outcome data and calculate median overall survival for patients with metastatic pheochromocytoma and paraganglioma (PPGL) and adrenocortical carcinoma (ACC) using existing standard of are therapies over the past 10 years	Primary aims: i) identify the clinical need within the UK, ii) review outcome data and calculate median overall survival for patients with metastatic pheochromocytoma and paraganglioma (PPGL) and adrenocortical carcinoma (ACC) using existing standard of care therapies over the past 10 years	10 years

Collaborators and Investigators

• Sponsor: Society for Endocrinology

Study record dates

Study Major Dates

• Study Start (Actual): January 15, 2025
• Primary Completion (Estimated): June 30, 2034
• Study Completion (Estimated): December 31, 2034

Study Registration Dates

• First Submitted: November 27, 2024
• First Submitted That Met QC Criteria: March 5, 2025
• First Posted (Actual): March 25, 2025

Study Record Updates

• Last Update Posted (Actual): March 25, 2025
• Last Update Submitted That Met QC Criteria: March 5, 2025
• Last Verified: March 1, 2025

More Information

Terms related to this study

• Additional Relevant MeSH Terms: Endocrine System Diseases; Neoplasms by Site; Neoplasms; Neoplasms by Histologic Type; Endocrine Gland Neoplasms; Neuroectodermal Tumors; Neoplasms, Germ Cell and Embryonal; Neoplasms, Nerve Tissue; Neuroendocrine Tumors; Adrenal Gland Diseases; Pheochromocytoma; Paraganglioma; Adrenal Gland Neoplasms
• Other Study ID Numbers: NSAT2024.01

Drug and device information, study documents

• Studies a U.S. FDA-regulated drug product: No
• Studies a U.S. FDA-regulated device product: No
• product manufactured in and exported from the U.S.: No