For Researchers

For Researchers

What data is collected?

MiNDAUS Patient Registry (self reported)

The modules in the MiNDAUS Patient Registry  include:

  • Module 0: Demographics
  • Module 1:  Consents
  • Module 3: Legal Documents
  • Module 3: My Recent Symptoms
  • Module 4: My Journey
  • Module 5: My Needs
  • Module 6: My Calculators
  • Module 7: My Care Team
  • Module 8: My Appointments

A full list of data variables is available here.

Diagrammatic representation of the MiNDAUS Patient Registry

MiNDAUS Clinical Registry

Information in the Clinical Registry is collected during normal Specialist Clinic visits at the first and subsequent visits (at three to four monthly intervals).  The modules in the Clinical Registry include:

  1. Onset of disease
  2. Family History
  3. Medical History
  4. Tests use to provide the diagnosis.
  5. Regions of the body affected by disease.
  6. A functional rating scale – ALSFRS-R
  7. Treatments
  8. Service use
  9. General questions about lifestyle such as smoking status and occupation

A full list of data variables is available here.

Diagrammatic representation of the MiNDAUS Clinical Registry

How can I access the data?

All requests for data go through the Data Operations Manager, MiNDAUS Registries to the MiNDAUS Registries Governance Committee.  In order to access data, external researchers must satisfy the requirements of the registry governance committee regarding ethical use of the data and maintaining patient privacy. Access the data request form here.

External researchers wishing to access  registry data must apply for approval from the registry governance committee. This process applies to requests for de-identified data  and involves:

  • Submission of a research proposal to the MiNDAUS Registries Governance Committee; and
  • Demonstration of evidence of ethical clearance to conduct the research from an independent ethical review board.

External researchers wishing to conduct clinical trials or other studies which require access to identifiable information will not be able contact registry participants directly. Once they have been granted approval from the registry governance committee, the registry team will contact eligible members of the registry on behalf of the third-party researchers. Interested registry participants will then contact the third-party researchers directly in order to decide whether they wish to participate.

Request Data Access

All requests for data access must go through the Data Operations Manager, MiNDAUS Registries. Access the data request form here.

For further information, please email Catherine Hansen.