National Register for Adrenal Tumours
Research type
Research Database
IRAS ID
335119
Contact name
Jessica Davis
Contact email
Research summary
National Register for Adrenal Tumours
REC name
Wales REC 7
REC reference
23/WA/0335
Date of REC Opinion
27 Nov 2023
REC opinion
Favourable Opinion
Data collection arrangements
Data Will be stored at the Society for Endocrinology and the PeopleWith app. Data will be collected by clinicians in local hospitals and provided by patients through an app.
Sites will have individualised log ins to the platform to input clinical patient related data.
Sites will be required to keep a secure screening log of the patients as the data inputted into the platform will be anonymised by a patient identifier.
Patients will input their own patient related data into the app when they see fit.
The PeopleWith App user or ‘Patient’ acts as the owner and controller of their own data. The patient is at the centre and provides their own consent regarding sharing of their Health Data.
PeopleWith acts as Data Processor as defined in the General Data Protection Regulation (GDPR).Research programme
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 or phaeochromocytoma/paraganglioma. The purpose is to answer questions about the diagnosis and management of these rare tumours, which will be best assessed by combing these rare cases at a national level recruited 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.
Research database title
National Register for Adrenal Tumours
Establishment organisation
Society for Endocrinology
Establishment organisation address
Society For Endocrinology,
1600 Bristol Parkway North
Bristol
BS34 8YU