Adrenal Tumour Registry 

AAA, a Novartis Company
HRA Pharma

Data registry

Patients with a confirmed diagnosis of Pheochromocytoma and Paraganglioma (PPGL) and Adrenal Cortical Cancer (ACC) 

March 2024 to commence data recruitment. The register will remain available to prospective data collection and research questions until 2034.

March 2024 – March 2034

To collect clinical and real-world data on patients with a diagnosis of or a hereditary risk of PPGL, adrenal tumours or ACC to be able to better understand the condition and improve treatment outcomes for patients across hospital settings in the UK and Ireland and to contribute to international datasets to enhance the care provided for these rare tumours internationally

• Recruited patients into the register and minimal missing data

The national registry will provide important information to industry on the unmet needs and health burden of adrenal tumours (e.g., metastatic PPGL) in the UK and Ireland 

The development of a well-characterized national registry will be of significant interest to industry partners to study newly developed and future treatment modalities as part of a clinical trial and in future discussions with NHSE and NICE regarding

• Papers produced using the data collected in the register
• National and International presentations
• Clinical trials recruiting in the UK and Ireland

Dr Ruth Casey 
Dr Scott Akker 
Dr Samuel O’Toole 
Dr James Pittaway 
Dr Daniel Morganstein  
Dr Rohini Sharma 
Ms Jo Grey, AMEND 
Ms Jessica Davis  

• Barts NHS Trust
• Cambridge University Hospital NHS Trust
• Guy's and St Thomas' NHS Foundation Trust
• Imperial College Healthcare NHS Trust
• Leeds Teaching Hospital NHS Foundation Trust
• Liverpool University Hospital NHS Foundation Trust
• Newcastle Hospitals NHS Foundation Trust
• Ninewells Hospital Dundee
• Norfolk and Norwich University Hospitals NHS trust
• Nottingham University Hospitals NHS Trust
• Oxford University Hospitals
• Royal Devon University Healthcare NHS Trust
• Royal Free London NHS Foundation Trust
• Royal Victoria Hospital,
• Belfast
• Salford Royal Hospital,
• Northern Care Alliance 
  Sheffield Teaching Hospital NHS Trust
• South Tees Hospitals NHS Foundation Trust
• The Christie NHS Foundation Trust
• University College London Hospitals 
• University Hospital of Wales
• University Hospital
• Southampton
• University Hospitals Birmingham