The registry

Different centres currently manage patients with myeloma and related diseases in slightly different ways, and more information is needed about which treatments work best, when to use them, and how patients’ health changes over time. The registry will help to answer these questions.

What is a clinical registry?

Clinical registries collect the same set of medical and quality of life information from a group of patients. Researchers then use that data to compare the treatment patients receive, and link that with outcomes. They can monitor the effectiveness of drug treatments. They can also bring clusters of poor patient outcomes to attention, allowing treatment centres to investigate underlying causes such as staffing levels, staff education, or sub-standard practice.

Comparing registry data allows treating institutes and clinicians to work towards high quality care and treatment that is similar for all patients. In this way, they strive to provide equal access to the best care.

Clinical registries aim to collect complete, accurate and scientifically useful data so that results generated are respected by clinicians and healthcare institutes.

What does the Myeloma and Related Diseases Registry do?

The valuable data patients provide, and our work in gathering and interpreting it, allows clinicians and medical researchers to better understand the causes and treatments for myeloma and related diseases.

The treatment that patients with myeloma and related diseases receive varies slightly depending on their treatment centre. The registry hopes to provide information about which treatments work best. The MRDR will also help generate ideas for future research, identify gaps in healthcare services that should be addressed, and provide experts with a forum to learn from each other and work together. See more on the registry's aims.

About the data we collect

MRDR population health specialists and leading clinicians select the information the registry collects, to ensure the registry provides practical information that is relevant to current clinical practice, and can drive improvements with clear benefits to patients.

The following data helps us achieve this:

  • General health at diagnosis
  • Demographic details (gender, age)
  • Laboratory and imaging results at diagnosis
  • Therapy decisions
  • Treatment outcomes
  • Your clinician will also ask you to complete a short survey called the EQ-5D, which measures your quality of life. This is optional and helps us understand the impact of these conditions on your everyday life. Patients with myeloma, plasma cell leukaemia and plasmacytoma are asked to complete this every four months, and annually for MGUS.

How do you participate?

If you've been recently diagnosed with myeloma, plasma cell leukaemia, plasmacytoma or MGUS, and your treating centre participates in the MRDR, you are eligible to participate. The registry is opt-out. A member of your treatment team will provide you with information and a brochure about the registry and let you know that participation is voluntary and you can withdraw at any time. If we don’t hear from you within six weeks to say that you don’t want to participate in the registry, we assume you are a participant and your routine health details are entered into the registry. 

You can request to be removed from the registry at any time, even after your details have been entered, without any consequences for your treatment or care.

You can find out more about participating on Get Involved.

What is myeloma?

For patient information about myeloma and available support, the following organisations provide excellent specialised resources: