Clinical Trials Patient Registry
Not ready to join a clinical trial right now but want to keep in touch?
Many people who contact us are on watch and wait, on low dose treatment, or not yet ready to take part in a clinical trial, but are interested in the possibility of taking part in the future.
Clinical Trials Patient Registry
We started the Clinical Trials Patient Registry as a way of keeping in contact with you if you're in this situation. We'll provide updates via a quarterly e-newsletter, as new trials become available to ensure you can access trials at the earliest opportunity.
You can sign up to our Clinical Trials Patient Registry by filling out the Clinical Trials Support Service referral form below:
"Getting updates on the continued improvements for the treatment of CLL just makes you feel that when you do need treatment it will be the best they have to offer."
- Ed, who was diagnosed with CLL in 2021
Observational studies
Whilst it may not be the right time for you to join a clinical trial, there are many observational studies (non-interventional studies) taking place which you may be eligible to take part in.
Below are some condition specific observational studies:
- COSMOS - an observational study for people with a diagnosis of asymptomatic or smouldering myeloma - Read more about the COSMOS study
- MOSAICC - a UK-wide case-control study that aims to identify what causes MPNs and assess the quality of life and unmet needs of those who suffer from these conditions - Read more about the MOSAICC Study
- SECURE - An observational study in patients with MGUS - Read more about the SECURE study
Research programmes
There are also research programmes you can join:
Our Future Health - the UK's largest health research programme
Every adult living in the UK is eligible to join Our Future Health, including people with pre-existing health conditions. By taking part in Our Future Health, you’ll support new discoveries that will help people live healthier lives for longer. You’ll also have the chance to find out more about your own health and future risk of disease.
National Institute for Health and Care Research (NIHR) BioResource
By joining the NIHR BioResource, you can play an important role in helping drive health research forward. Everyone who volunteers contributes to the search for better diagnosis and treatment into a range of common and rare diseases.
If you're on active monitoring (watch and wait)
We have lots of information around what it means to be on active monitoring (watch and wait), and around finding ways to cope with being on this treatment pathway - Active monitoring (watch and wait)
We also have lots of people on our Online Community Forum who are on active monitoring. If you feel like it might be a useful source of support to connect with others also on active monitoring (watch and wait) free to take a look or join in the conversations on our Forum:
