Rare disease patient registry guidelines

Overview

The Rare Disease Patient Registries: Guidelines for Establishment, Governance and Operation are being developed by the Office of Population Health Genomics (OPHG), Department of Health (Western Australia). The guidelines are intended to provide assistance to those in the Western Australian (WA) health system who are involved in establishing, managing or utilizing rare disease patient registries.

Why your views matter

As a part of the development process, feedback is being sought from key stakeholders on the drafted guidelines in order to produce comprehensive guidelines that will be valuable to those with direct involvement in the establishment and operation of rare disease patient registries in WA.

The survey is open to anyone with an interest in rare disease patient registries. Specific feedback is being sought from a broad range of stakeholders, including those who have been involved in establishing, managing, participating in or utilizing rare disease registries, and from experts in the fields of ethics, law, bioinformatics and policy development. The objective of this consultation is to receive feedback on the draft guideline content and usability and identify any gaps in the draft guidelines.

After you have read the draft guidelines (available for download below), please provide us with your feedback by completing our online survey.

What happens next

All feedback tprovided will be used to improve the usefulness of the guidelines and to ensure that the finalised guidelines will be effectively used in the establishment of new rare disease registries in WA.