Most of the information collected by the MRDR can be found in your medical and hospital notes.
This information includes:
- Health at diagnosis
- Demographic details
- Laboratory and imaging results at diagnosis
- Therapy decisions
Your clinician will also ask you to complete a short survey, called the EQ5D that measures your quality of life. This survey is completely voluntary and can be completed at home or at your clinic.
Patients with myeloma, plasma cell leukaemia and plasmacytoma will be asked to complete this survey at diagnosis and then every four months.
Patients with MGUS will be asked to complete it at diagnosis and then annually.