Request to Distribute
Scope of Requests Considered
This policy applies to all external requests to circulate:
- Surveys
- Questionnaires
- Research participation invitations
- Evaluation or consultation requests
If approved, these may be shared through our email lists, newsletters, or social media.
What We Look For
We assess each request against the following:
- The topic must relate to organ failure, dialysis, transplantation, tissue/eye donation, health services, or consumer experiences in these areas
- Activities should align with ANZORRG’s purpose and benefit patients, families, donors, clinicians, or the wider community
- The request must come from a recognised organisation, researcher, or health service
- For research, ethics approval (HREC or equivalent) is preferred
- Surveys collecting sensitive information must include appropriate consent and safeguards
- Participation should be voluntary, clearly explained, and not overly demanding (in time or personal impact)
- We actively monitor how many requests are sent to avoid survey fatigue
Requests must include:
- Who is running the survey
- Purpose, expected time, and what participation involves
- How information will be used and stored
- Contact details for questions or concerns
- ANZORRG will never provide direct contact details to external groups
- If approved, ANZORRG circulates the survey on your behalf
- Responses are only shared if individuals actively opt in
How to Apply
- Complete the Sharing Request Form
– Submit the form at the bottom of this page
– Or, email a written request to: community@anzdata.org.au - Review
– Requests are reviewed by the Communications and Compliance Lead or delegate - Outcome
– Approved: shared through our agreed channels
– More information required: we’ll be in touch
– Not approved: you’ll receive a short explanation
Managing Capacity
To protect our community from overload:
- We generally share no more than one external survey per month
- Timing may be adjusted depending on relevance and demand
- Priority is given to projects directly linked to ANZORRG/ANZDATA, registry improvements, or work led by partner organisations