Our Framework and Governance

Our Framework and Governance

Our framework and governance for privacy, data collection, storage and management of data access requests have been ethically reviewed  by the Monash Health Human Research Ethics Committee and approved. 

Our approval number is: RES-21-0000-058A

MiNDAUS National MND/ALS Registry Framework

This document contains explanations about the background to this project, our funding, our partners and our governance structure. Please click here for the latest version: MiNDAUS Clinical and Patient Registry Framework Version 1.2.

In research projects, this type of document would be known as the Research Protocol.

Participant Information and Consent Form

This form explains everything patients and carers need to know to decide whether or not to participate, and includes a detailed consent section.  Please find a copy of the latest version here: MiNDAUS Clinical Reg National PICF template v1.2. 

MiNDAUS Privacy Policy

We take your privacy and the security of all your data very seriously, as detailed in this policy document: MiNDAUS Privacy Policy v1.0

Our standard operating procedures

The MiNDAUS Partnership is committed to excellence across all our sites, and we’ve developed standard operating procedures for personnel at participating sites:

Clinical Site Master Resource Document

Clinic Admin Training 

Data Entry and Query Resolution 

If you would like to access the latest versions of these, please contact the Data Operations Manager. 

Informed consent

MiNDAUS SOP Informed Consent v1.0

Training and User guides

Registry user guides have been developed for people with MND and clinical site personnel.

The patient user guide was developed in two parts and can be accessed here: Part One; Part Two.