Genomic Testing and CLL 2013 Autumn

Genomic testing and CLL: An update on a study being conducted by the University of Oxford James Buchanan, Sarah Wordsworth and Anna Schuh

 

Most CLL patients are treated with chemoimmunotherapy as their first or second treatment. Although the majority of patients respond really well, there is also a group of patients who will not respond or who will relapse within 2 years of treatment. If doctors could identify these patients before treatment is started, they could offer them an alternative instead. 

Most patients already undergo FISH testing before beginning chemoimmunotherapy treatment. FISH testing can provide some information on likely response to treatment, but this information is quite limited and many patients still do not have access to FISH testing. Also, FISH testing only predicts lack of response in about a third of patients with refractory CLL. Hence, for most patients there is no way of predicting their response to chemoimmunotherapy before treatment starts. 

A new test is being developed in a study by Oxford University Hospitals NHS Trust and the University of Oxford. This work is led by Dr Anna Schuh, who many of you met at the Oxford members meetings in March 2012 and October 2013. This test will provide CLL patients and their doctors with some information about how they will respond to the usual treatment. This test is called a genomic test. 

HOW HAVE CLLSA MEMBERS BEEN HELPING WITH THIS STUDY?

As part of this work, we have been conducting a survey to ask what CLL patients think about genomic testing. We hope that the survey results will help doctors and decision makers when they are deciding how useful genomic testing is for CLL patients. 

Over the course of the summer, we contacted all CLLSA patient members to ask you to complete a survey. If you normally receive this newsletter by email, we contacted you by email, and if you normally receive this newsletter by mail, we sent you a letter. 

PROGRESS SO FAR So far we have received 150 survey replies, which is really great news for this study. Thank you to every CLLSA member who has responded so far. However, we still need more survey replies! We’d like to get up to at least 200 replies if possible - can you help us to reach this target?! 

We have recently contacted all CLLSA members for a final time, by post and email. If you have already completed a survey for us, please ignore the email or letter that you receive. If you did not reply last time, then we would be delighted if you would consider completing our survey and returning it to us. 

To help you to complete the survey we have set up a webpage at www.herc.ox.ac.uk/cll. This will give you some more information about the survey and answer some common questions (e.g. What is a genomic test? What is chemoimmunotherapy?). 

If you have any questions about this study, you can contact James Buchanan at the University of Oxford (Email: oxfordcllsurvey@dph.ox.ac.uk; Telephone: 01865 289262). 

Finally, we would like to place on record are thanks to the CLLSA trustees for their help with this survey. Chonette Taylor and Sarah Tobin have been particularly helpful, and we wouldn’t have been able to collect the information that we need for this work without their assistance.