GENERAL INFORMATION FOR PATIENTS
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.
Participation is voluntary and you can leave the registry at any time (see “Opting Off the Registry” section below) without affecting the treatment or care provided to you.
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.
OPTING-OUT OF THE REGISTRY
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 firstname.lastname@example.org.
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.
Leukaemia Foundation is a motivated collective focusing to reach more Australians with blood cancer, maximise patient access to treatment and improve patient survival outcomes by investing in world-leading research.
Some highlights of the Leukaemia Foundation in recent years include:
- building a cross-function triage team and new online support forms (i.e. facilitating webinars/online support groups and disease-specific booklets and fact sheets) for patients and healthcare professionals to achieve early access to cancer support;
- leading the Blood Cancer Taskforce to deliver the Optimal Care Pathways for patients to receive the best care irrespective of where are based; and
- establishing a Consumer Engagement Group to co-develop the business process, systems, policies and procedures.