Ethical Considerations regarding the ENRAH Registry

The ENRAH Registry contains health data and information derived from patients, families, healthcare professionals, and researchers concerning AHC or related conditions. This data and information should be considered confidential, and every care should be taken to protect the privacy of the patients and families from which the data and information are derived or related. Users of the ENRAH Registry must be mindful and respectful of the dignity of all persons on whom knowledge of this data and information may impact. Respect for the dignity of persons, and the full maintenance of confidentiality regarding the data and information, must be determining as the highest values for the access and use of this data.

Responsibilities regarding the ENRAH Registry

ENRAH is responsible for maintaining the Registry, including providing appropriate security for the ongoing protection of the confidentiality of the data and information as well as the privacy of the data and information providers and those whom the data and information might otherwise affect. In this Registry, ENRAH has built a state-of-the-art tool for the collection and use of data and information related to AHC, which also encourages and facilitates responsible and high quality reporting and use of data and information. Nonetheless, ENRAH is not in a position to guarantee the accuracy or reliability of the data and information found in the Registry, and ENRAH can take no responsibility for any use, application, or conclusions drawn from the data and information provided here. EHRAH herewith informs all users of the ENRAH Registry, whether as providers or end-users of the data and information found here, that they have full and complete responsibility for the data and information they either provide or use. ENRAH, including its members and employees, disclaims any moral, scientific, or legal responsibility for the accuracy, quality, or use (or misuse) of the data and information provided in this Registry.