Terms of Agreement for Using the ENRAH Registry

Any entry into the ENRAH Registry is regarded as a use of the Registry, be it for observational purposes, reporting data and information, collating data or information, or the application of data or information. Use of the ENRAH Registry is only granted to members of ENRAH or those individuals and organizations who receive written permission from ENRAH. The ENRAH Steering Board may limit the use by any or all users as it determines. All other uses of the ENRAH Registry are unauthorized and may be illegal. ENRAH is fully committed to protecting the privacy and confidentiality of those persons that provided data and information or who will be affected directly or indirectly by the use of the data and information found in this Registry.

All users of the ENRAH Registry must explicitly agree to the following seven binding terms:

• I will uphold respect for the dignity, privacy, and confidentiality of the patients, families, or any persons affected by the data and information provided in the ENRAH Registry as the preeminent consideration regarding my usage of the ENRAH Registry.
• I am responsible for the authenticity, accuracy, completeness, and quality of the data and information I introduce into the Registry as well as for any analysis or application of data and information found in the Registry.
• I agree that any data and information I introduce into the Registry may be shared with all users according to the determinations of the ENRAH Steering Board, and that the ENRAH for SMEs Consortium acts as the custodian of all data and information in the registry. The Steering Board of ENRAH may transfer the custodianship of this Registry and/or the information and data contained in it to a third party or another organisation at any time without informing me or seeking my agreement/consent.
• I agree to notify the ENRAH Secretariat in writing in advance of any research carried out making use of the ENRAH Registry. This notification will include the purpose, methodology, and sought outcomes of the proposed research. I also agree to notify the ENRAH Secretariat of the full results of any research that has made use of the ENRAH Registry.
• I agree that any publication using data or information from the ENRAH Registry will contain a written acknowledgement of the ‘ENRAHs for SMEs Consortium’.
• I agree not to share data or information from the ENRAH Registry with any third party prior to receiving written approval from the ENRAH Steering Board.