Greetings

Research is a critical part of understanding diseases and their treatment. As set out in our Trust Deed, a key objective for CLL Advocates NZ is to ‘promote and support NZ-based research on CLL, including the value and importance of developing and participating in clinical trials, and improving the quality of NZ data on CLL. In pursuit of this objective we’re developing or supporting a number of initiatives:

• Clinical trials in NZ. You can find information on our website about ClinTrial Refer New Zealand. If you’re interested in keeping up to date with trials of CLL treatments in NZ, you can download the free app supported by HSANZ (Haematology Society of Australia and NZ) here. A number of New Zealanders have been enrolled in trials, often gaining access to unfunded medications, including “last resort” treatment options for advanced disease. There are numerous such trials actively recruiting as I write. One is Rob Weinkove’s work at the Malaghan Institute in Wellington, on CAR – T cell therapy. Trials of Zanubrutinib vs Ibrutinib  are also recruiting in New Zealand.
• Second malignancies in CLL. We have proposed a summer studentship/research grant in the Bay of Plenty on this topic. Second malignancies are one of the commonest causes of death in CLL. They include Richter’s Syndrome and skin cancers, including melanoma. The project should start at the end of 2020. Having been a researcher in such studies myself, I know that patient involvement in research projects often significantly increases their own understanding of the disease, as they often involve frequent contact with health professionals and present good opportunities to talk about CLL with them.
• A PhD research study on the use of cannabis as a medicine for cancer patients. Dr Karen Oldfield is a PhD candidate at Victoria University of Wellington and a Senior Clinical Research Fellow at the Medical Research Institute of New Zealand, who is looking at the use of cannabis as a medicine in NZ. She’s inviting cancer patients to take part in a 5-10 minute online survey about their thoughts on this topic. All information collected will be treated as confidential. This is a valuable research project, as well as a way of fostering links between CLL patients and NZ research groups, and I warmly encourage you to take part. If you’re interested in helping with this research, go to this link on our website.

Finally, do remember the CLL forum we are having online and live at LBC headquarters on 14 October, 5.30 – 7.00pm. Invitations and details will be coming out shortly.

Best wishes

Neil Graham