We'd like your feedback
Your feedback is important to us. It will help us improve the quality of the study information on this site. Please answer both questions.
Contact the study team using the details below to take part. If there are no contact details below please ask your doctor in the first instance.
Ruth
Casey
rc674@medschl.cam.ac.uk
Andrea
Lake
research@endocrinology.org
Jessica
Davis
research@endocrinology.org
Jessica
Davis
jessica.davis@endocrinology.org
Dr
Claire
Matthews
claire.matthews@nihr.ac.uk
Andrea
Lake
andrea.lake@nhs.net
Ruth
Casey
research@endocrinology.org
Grace
Okoro
grace.okoro@endocrinology.org
Malignant neoplasms of urinary tract
This information is provided directly by researchers, and we recognise that it isn't always easy to understand. We are working with researchers to improve the accessibility of this information. In some summaries, you may come across links to external websites. These websites will have more information to help you better understand the study.
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.
Start dates may differ between countries and research sites. The research team are responsible for keeping the information up-to-date.
The recruitment start and end dates are as follows:
Observational type: Cohort study;
You can take part if:
You may not be able to take part if:
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
Below are the locations for where you can take part in the trial. Please note that not all sites may be open.
Grace
Okoro
grace.okoro@endocrinology.org
Andrea
Lake
research@endocrinology.org
Jessica
Davis
research@endocrinology.org
Ruth
Casey
research@endocrinology.org
Jessica
Davis
jessica.davis@endocrinology.org
Dr
Claire
Matthews
claire.matthews@nihr.ac.uk
Ruth
Casey
rc674@medschl.cam.ac.uk
Andrea
Lake
andrea.lake@nhs.net
The study is sponsored by SOCIETY FOR ENDOCRINOLOGY and funded by ADVANCED ACCELERATOR APPLICATIONS; SOCIETY FOR ENDOCRINOLOGY; HRA Pharma; .
Your feedback is important to us. It will help us improve the quality of the study information on this site. Please answer both questions.
Read full details
for Trial ID: CPMS 64281
You can print or share the study information with your GP/healthcare provider or contact the research team directly.
