GENERAL INFORMATION FOR PATIENTS

 

Eligibility

Patients 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.
  • Cause of death listed as lymphoma.

Your hospital will let you know if your details will be included in the registry. It is important to let us or your treating clinician 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 your treating clinician, or reach us on +61 3 99030558 or 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 (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.

Survey 3: 2026 Global Patient Survey on Lymphoma & CLL

 

 

 

 

 

 

 

 

 

Calling all patients and care partners! The 2026 Global Patient Survey on Lymphomas & CLL (GPS) is now live. It is the only opportunity for the worldwide lymphoma and CLL community of patients and care partners to share insights related to their experiences with lymphoma and CLL with the goal of improving patient care globally and locally.

LaRDR is encouraging all adult patients and care partners to complete the GPS from Lymphoma Coalition, including people who have participated before. Taking the time to do the survey every 2 years helps detect clinical trends over time, which can help other patients and care partners now and in the future.

  • What: 2026 Global Patient Survey on Lymphoma & CLL
  • Who: People living with lymphoma and care partners aged 18 & over
  • Time: ~ 40 minutes depending on experience with treatment and side effects
  • When: Now! Survey will be open till the end of March 2026
  • Why: To bring accurate voices and values of patients to lymphoma care, support, research and health policy

The survey is available in 21 languages and can be found at this link: https://bit.ly/LymphomaCoalitionGPS2026

Lymphoma Coalition is a worldwide network of lymphoma and CLL patient organisations committed to bringing equity in lymphoma and CLL outcomes across borders. This is the 10th Global Patient Survey on Lymphoma & CLL, which is done biennially. Since its launch, more than 50,000 patients and care partners from 80+ countries have completed the survey. Find out more about the current and past surveys at www.lymphomacoalition.org/global-patient-survey.