All quantitative data required for the MRDR is collected from the medical and pathology notes collected during standard medical care, with data collected on how the disease has impacted on the patient’s health, quality of life and functional ability at the time of diagnosis and throughout treatment. This is summarised below.
ECOG or Karnovsky Performance Status measures are retrieved from the patient’s notes or restrospectively assigned by the local clinician based on clinical information in the notes.
Quality of life information is collected via the EQ-5D-5L (EQ5D). The EQ-5D-5L survey is an instrument that is used as a measure of health outcome and quality of life. Frequency of administration is dependent on diagnosis.
Data items collected
- Health at diagnosis
- Demographic details
- Laboratory and imaging results at diagnosis
- Therapy decisions including pre therapy benchmarking, chemotherapy, autologous stem cell transplants, allogeneic stem cell transplants and maintenance and supportive therapy
- Outcomes (overall and progression free survival, duration of response and time to next treatment and quality of life measures – EQ-5D-5L)
- Long-term Outcomes (through linkage with Cancer and Death Registries).
Detailed schedule of assessments
|Patient Identified||Site clinician identifies patient meeting inclusion criteria|
|Provision of information to patient (or delegate)||At the time of the patient’s routine visit to the hospital they are given the MRDR project brochure as well as verbal explanation of the registry by the local investigator (or delegate). They have the opportunity at this and any stage to “opt out” from the study.|
Frequency of administration is dependent on diagnosis:
Occurs following the provision of the patient information brochure. Key data entry time points are listed below: