Information for participants

What are thrombotic microangiopathies (TMAs)?

TMAs are a collection of rare and serious conditions which can cause kidney failure, low platelet count and other organ damage. These conditions include thrombotic thrombocytopenic purpura (TTP), haemolytic uremic syndrome (HUS) and atypical haemolytic uremic syndrome (aHUS). TMAs can have a variety of causes including genetic and environmental factors.

What is the purpose of the TMA Registry?

The purpose of the Registry is to collect information on these rare conditions to better understand how frequently they occur, the therapies doctors use to treat the disorders and the complications of the disease and it’s treatment. This will help doctors and nurses provide patients with TMA the best possible care and will assist researchers in improving treatments.

What is involved?

If your hospital is contributing to the TMA Registry and you meet the eligibility criteria, clinical or research staff may ask you to participate and will provide you with a Participant Brochure. T hey will collect your health information either directly from you or from the hospital medical records.

Your medical record may be accessed more than once and information will be stored indefinitely in a secure, restricted access database. You can access your information on the Registry at any time by contacting the TMA Registry.

You can opt-out of the Registry at any time. Opting-out will not affect your treatment, or relationship with the hospital or your treating clinician. Remaining on the Registry does not require any action on your behalf.

What information do we collect?

Information about patients being treated for a TMA will be entered into our secure registry by your treating clinician over the course of your treatment and follow-up. This will include the following details:

  • Your name, sex and date of birth and your doctor’s name, so we can identify progress of treatment over time
  • The circumstances and symptoms leading up to the diagnosis of TMA
  • Any other illnesses, medications or history which could influence the onset and treatment of TMA
  • The type of treatment, the response of the illness to those treatments and any complications of the illness or treatment
  • Relevant laboratory test and scan results

How we protect your privacy

Your privacy is extremely important to us. Your information will only be used for research purposes. No analysis or public reports will contain information that could identify you.

This project has also been reviewed by the participating hospital's Human Research Ethics Committee (HREC) and/or Research Governance Office.

Your information is securely stored at Monash University in Australia. The information is restricted to appropriate staff and research officers who are committed to maintaining confidentiality For further information about how your personal data is managed by Monash University, please visit the University’s Data Protection and Privacy Office webpage at monash.edu/privacy-monash and the Data Protection and Privacy Procedure.

If you would like to be involved or would like more information, please contact us.