GENERAL INFORMATION FOR PATIENTS

 

eligibility


Patients recently diagnosed with lymphoma at hospitals participating in LaRDR will be included in the registry unless they choose not to participate.  The following criteria must be met for a patient to be included:

  • A new diagnosis of non-Hodgkin lymphoma, Hodgkin lymphoma, chronic lymphocytic leukaemia and related diseases
  • Diagnosis within 6 months prior to ethics approval at the hospital, to minimise retrospective data collection.
  • Age ≥18 years
  • Cause of death listed as lymphoma.

It is important to note that your details will automatically be included in the registry unless you let us know that you do not want to participate. Participation is entirely voluntary and you can choose to opt-out at any time, without affecting your treatment in any way.

To opt out of participating in LaRDR, please contact us at +61 3 99030558 or email us at lymphomaregsitry@monash.edu.

information collected


The following information is routinely collected in clinical care and will be provided to the registry database:

  • Name and date of birth
  • Medical history and current health status
  • Diagnosis and treatment details

The information and details collected  will never be released and only used in a de-identified (anonymous) format for research purposes.

Learn More About Lymphoma with Our Partners

There are general resources for understanding lymphoma provided by the following organisations. The contents are independent of LaRDR.  Your haematologists and lymphoma nurses always remain the best points of contact if you have questions about your lymphoma diagnosis and treatment options.

Survey 1: Living Well with Lymphoma: Help improve care by sharing your experience

The LymphomaPRO Voices study invites individuals diagnosed with any lymphoma to complete a survey. By participating, you will help researchers understand how the symptoms and treatments for lymphoma affect your daily life, an important first step towards finding ways to improve care.

Click here to complete the survey by 28 February 2026 (or enter the following link in your web browser: rebrand.ly/3ogqrfn).

More information is available here.

This study is led by A/Professor Claudia Rutherford at the University of Sydney.

For further information, please contact A/Prof Rutherford at (02) 8627 1583 or claudia.rutherford@sydney.edu.au

Survey 2: Preferences for treatments that help to prevent infections in people with blood cancers

The OPTIMAL – NHMRC Centre of Research Excellence program invites Australians diagnosed with non-Hodgkin lymphoma and chronic lymphocytic leukaemia to complete a survey. By participating, you will help researchers understand how personal preferences for different aspects of different treatments help prevent infection and what is important to patients.

Click here to complete the survey by 28 February 2026 (or enter the following link in your web browser: optimalcre.org/dce-survey).

More information is available here. If you choose to provide your email address after completing the survey, you will be sent a $20 voucher.

This study is led by Dr Laura Fanning at Monash University.

For further information, please contact Dr Fanning at (03) 9903 1539 or laura.fanning@monash.edu.