STaR stands for our Studies, Trials and Research Group. Through STaR we will be helping those affected by CLL or SLL to get involved in Patient and Public Involvement and Engagement (PPIE), if they wish.
One of the three key purposes of CLL Support is to promote and support scientific research into the treatment and care of CLL (and SLL) patients. We want our members to be fully informed about what is happening in CLL research and development, and to give them the opportunity to be involved if they wish. Essential to research are clinical trials. All trials need ethics approval.,and they won’t get that without good Patient and Public Involvement and Engagement (PPIE). Find out how you can be involved below.
Watch this video for more information
Dr Ben Kennedy and Chair of CLL Support Hilary Lindsay, discuss the STaR initiative. Watch here.
Our purpose is to inform, support and empower CLL and SLL patients in the UK. To do this:
Clinical trials are a vital part of research and developing new treatments. Researchers can compare the effects of new drugs and treatments to find out if they work better than current treatments.
Trials can be a good option for people with CLL as they may receive the latest treatments and best care.
You can find out more about clinical trials, including how to find a trial, on our website here.
There is also information on the Blood Cancer UK website here.
At the end of our 2024 survey, a significant number of our members indicated an interest in volunteering to help with any research or studies that could improve the care of people with CLL or SLL. In response we have launched a Patient and Public Involvement and Engagement (PPIE) Register to enable us to contact members about specific opportunities where they might be able to help.
The PPIE Register will enable CLL Support to advise about:
Data in the PPIE Register will be held within CLL Support for these purposes only and will not be circulated to 3rd parties without express permission. Please note that CLL Support only works with pharmaceutical companies who are providing or developing treatments for CLL or SLL.
To join the register, click here to record your answers to a short list of questions.
If at any time your circumstances change, you can update your preferences by revisiting the link to the PPIE Register and resubmitting your answers.
By joining our PPIE Register there is absolutely no obligation to take part in any of the opportunities that may arise. Please note that we will not be sharing opportunities to join specific clinical research trials – to find out about these you should talk to your medical team or visit the website of the UK CLL Forum or Cancer Research UK.
We will be sharing updates about PPIE-related activities we have been involved in through our newsletters, bulletins, and on our website.
Recently our Vice-Chair, Peter Allen made a film with the CLL Advocates Network and BeOne about his experience of living on Active Monitoring. When Peter was diagnosed with CLL in 2001 the term used was ‘Watch & Wait’, which in itself created anxiety, and didn’t offer much support for the emotional challenges he and his family faced.
CLL Support have been working with CLL Advocates and BeOne to improve understanding and support for people living on what we now call, ‘Active Monitoring’, a term that comes with a better strategy for managing the challenges. There are three main areas of this strategy that we’re supporting improvements in:
You can watch Peter’s film here. It highlights how important it is that the medical community recognises that active monitoring isn’t just a medical strategy, it’s a challenging emotional period that requires comprehensive support for patients and their families.
The Humber and North Yorkshire Cancer Alliance wanted to find patients who might be interested in joining a steering group to look at prehabilitation and physical activity. We contacted the members on our register who met the criteria and asked for their permission to share their email addresses. We understand all those who did so have now been asked to get involved. A small success but a really important example of what we are trying to do with our PPIE Register.
Trustees Debbie Yates and Hilary Lindsay shared our 2024 Member survey findings with a pharmaceutical company at their staff conference in December 2024. Our results showed that, whether we are on active monitoring, on treatment or in remission, more than 50% of those with CLL or SLL suffer from fatigue. This finding had a huge impact on those there. Hilary and Debbie are now part of a wider group looking into what we can do to support those of us with CLL who suffer from fatigue. Watch this space for further developments.
Exercise is good for you
Some of you may well remember completing a questionnaire for the University of Surrey about your exercise habits. That research has led to a paper being published by Dr David Bartlett, Ellie Miles and others in eJHaem, a journal of the British Society for Haematology. There has been wide coverage of the article in the CLL communities in many countries around the world and there is also a piece in The Independent. Thank you so much to those of you who contributed to the research. Watch this space for news of further exercise-related publications in due course.
This page was last reviewed 11th September 2025. Next review September 2028
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