You continue to have your usual monitoring while taking part in the study. This means if you are having a telephone or face-to-face appointment with your specialist every 6 to12 months this will carry on. Or if you usually just see your GP, this will continue.
Any hospital visits as part of the study are extra to your usual care.
You see the study team and have some tests before you join the study. The tests include:
- a physical examination
- height and weight
- blood tests
- a blood or urine pregnancy test, if there is a chance you could become pregnant
- a urine test if you have monoclonal gammopathy of uncertain significance (MGUS), Waldenström’s macroglobulinaemia (WM) or smouldering myeloma
- a spit (saliva) test if you have monoclonal B-cell lymphocytosis (MBL), stage A chronic lymphocytic leukaemia (CLL), IgM monoclonal gammopathy of uncertain significance (MGUS) or Waldenström’s macroglobulinaemia (WM)
- a bone marrow test – you do not have to have this to take part in the study. But you are likely to have a bone marrow test as part of your usual care if you are in group 2 or group 3.
- a scan such as a CT scan or MRI scan – you do not have to have this to take part in the study if you are in group 1 and 2. You will need to have an MRI scan unless you have had one in the last year if you are in group 3. If you have had a scan in the last year, the study team will see if this is suitable to use first.
The study team will call you after one year to check you are still happy to take part and answer any questions.
You see the study team 2 years after your first visit. And then 5 years after your first visit. You have some tests at these visits. These include:
- a physical examination
- blood tests
- urine test if you have monoclonal gammopathy of uncertain significance (MGUS), Waldenström’s macroglobulinaemia (WM) or smouldering myeloma
The study team ask you about any new medications and check how you are getting on.
For some people, the study will have closed before they get to their 5 year visit. The study team will write to you and let you know that you don’t need to come to any more appointments if this is the case.
Condition progression visit
The study team would like to see you if your condition progresses while you are taking part. You might find out about the progression from one of the study tests. Or as part of your routine care. The team will check how you are getting on.
You also have some tests. These depend on the type of lymphoproliferative disorder you have and what group you are in. They might include:
- a physical examination
- blood and urine tests - including a pregnancy test if this is suitable for you
- a bone marrow test
- scans - such as an MRI scan or CT scan
It’s likely you will have finished taking part in the study after your condition progression visit. If you still do not need treatment at this point and you’re still happy to take part in the study, the study team will explain what will happen.
Extra bone marrow samples
The study team will ask if you are happy to give extra bone marrow samples for the study. This would be at your first visit and at your progression visit (if you have one). These samples give researchers more information about the progression of lymphoproliferative disorders.
