Existing networks or registries and biobanks
ENSAT registry and biobanks
ENS@T aims to improve the understanding of the genetics, tumourigenesis and hypersecretion in patients with adrenal tumours and associated familial syndromes. It aims to improve the prediction of recurrence and the management of malignant adrenal tumours, which are particularly rare. In 2009, ENS@T became a membership-based society with statutes and bye-laws and a large number of European clinicians and scientists have joined in the efforts of the Network by becoming members of ENS@T. The ENS@T databases offer the opportunity to register any new patient with an adrenal mass with a core dataset, which requires less than 5 minutes. In addition, associated biomaterial, surgery, imaging and pathology and clinical follow-up forms can be completed
The International-CAH (I-CAH) network is an initiative to improve the clinical management of the rare disease Congenital Adrenal Hyperplasia. With a newly-created I-CAH Registry as its centrepiece, the initiative also focuses on providing information to patients and clinicians and developing research to optimise healthcare. The I-CAH Registry delivers a means of connecting clinical and research centres from around the world within a Virtual Research Environment (VRE) and will underpin research into new management strategies and therapies.
BijnierNET is a Dutch network concerning the Adrenal Gland. Through the newly created network patients, healthcare practitioners and informal carers have the opportunity to meet up (in the virtual sense) and share their experience, knowledge and ideas about the care for patients with adrenal gland disorders. The international website is under construction.