MTG1:
Adrenal

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

    visit website 

  • I-CAH registry

    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.

    visit website 

  • BijnierNET (AdrenalNET)

    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.

    visit Dutch website 

    visit international website 

Information video for patients and healthcare professionals

Type and Press “enter” to Search

Search
Privacy Overview
Endo-ERN

Endo-ERN Privacy Policy

Endo-ERN is committed to user’s privacy and does not track personal data when visiting our website. We act in accordance with Regulation 2016/679 of the European Parliament and of the Council.

‘Personal data’ means any information relating to an identified or identifiable natural person. An identifiable natural person is one who can be identified, directly or indirectly, in particular by reference to an identifier such as:

  • a name
  • an identification number
  • location data
  • an online identifier or to one or more factors specific to the physical, physiological, genetic, mental, economic, cultural or social identity of that natural person

Cookies

Endo-ERN only tracks anonymised data for statistical purposes. We do this via analytical cookies, placed through an anonymous IP Google analytics tag. The purpose of these cookies are to track the efficiency and success of the website.

These cookies do not store any personal data that can be linked to a natural person, but may save data such as inter alia, data about the website from which a person has come (the so-called referrer), which sub-pages were visited, or how often and for what duration a sub-page was viewed. The data collected through this is general data only, and cannot be traced back to one person.

It is possible to prevent the setting of cookies, by means of a setting of the Internet browser used. On top of that, already set cookies may be deleted at any time via an Internet browser or other software programs. This is possible in all popular Internet browsers.

Google Analytics does not share any data with third parties.

The principles of data protection do not apply to anonymous information and because these cookies minimally impact the privacy of the user, it is not necessary to ask for permission to use these cookies.

Newsletter

You may always unsubscribe from our newsletter at any time through the unsubscribe button located in our newsletter. Endo-ERN is both the controller and responsible for processing of any data regarding the newsletter. Endo-ERN does not make use of a third party for the Newsletter service.

E-services

Endo-ERN has a contact form, which activates your email software and allows you to send a comment or question to a general email address. When you send such a message, your personal data is collected only to the extent necessary to reply. If the team responsible for the mailbox is unable to answer your question, or your questions has regards to another party, it might forward your email to another service.

If you have any questions about the processing of your email and related personal data, do not hesitate to include them in your message.

The collected personal data and all information related to the above mentioned consultation is stored on the email server of the Endo-ERN Coordinating office and potentially those who have been concerned in the correspondence in order to respond to your comment.

Newsletter Tracking

The Endo-ERN newsletter makes use of tracking in order to be able to conduct a statistical analysis of the success or failure of online marketing campaigns. Endo-ERN may see if an email containing a newsletter was opened by a user, when it was opened, and which links were opened. 
The data collected through this tracking is generated and stored by Endo-ERN and is not shared with third parties, but may be used to adapt future content of newsletters in order to better meet the interests of our subscribers.

Contact details

For any questions regarding our privacy policy, please contact the Endo-ERN coordinating office.

You have the right to be forgotten and removed completely from the Endo-ERN contact database. To request this, please contact the Endo-ERN coordinating office.

Endo-ERN Coordinating Center, Meibergdreef 9, 1105 AZ  AMSTERDAM. The Netherlands

Strictly Necessary Cookies

Strictly Necessary Cookie should be enabled at all times so that we can save your preferences for cookie settings.