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The Annual Conference of the Chronic Lymphocytic Leukaemia (CLL) Alliance 2026, hosted by the Haematology Association of Ireland, took place in Dublin in February. The Alliance aims to expand the research and clinical trial landscape by streamlining CLL care pathways through the National Cancer Control Programme (NCCP) and integrating data collection and biobanking for real world evidence and translational studies.
The event featured a number of distinguished national and international speakers, including researchers, clinicians, and patient representatives.
The conference was opened by Dr Amjad Hayat, Consultant Haematologist at University Hospital Galway, and President of the Irish Haematology Society.
“To have a society like this in modern medicine is absolutely indispensable,” Dr Hayat told the meeting. He briefly described how medical treatments for CLL have evolved, saying “we need to work together, and we have to work with the patients and advocacy groups to promote what we want to achieve as doctors”.
“In Ireland, I think we have made real progress, working together and working with the [NCCP]. But as clinicians and as a professional society, we remain committed to working on behalf of our patients to get access [to treatment],” he continued.
“It is important that we continue to work together and to have these meetings and to continue to put pressure on authorities to allow us access to these drugs.”
The conference featured a wide selection of fascinating clinical vignettes presented by doctors and patient representatives that touched on important aspects of CLL, including a talk on the healthcare needs and quality of life of patients with CLL in the HSE Mid-West region, delivered by Dr Kornelia Marie Dembicka, University Hospital Limerick. There were also a range of case studies, including a rare case of CLL with CNS involvement by Dr Carina Meyer, University Hospital Limerick, and CLL with borderline immunoglobulin heavy-chain mutational status, delivered by Dr Andrew Hindley, PhD, Belfast Health and Social Care Trust.
Ms Jan Rynne, Chairperson of the CLL Ireland Trustee Board, discussed the importance of patient advocacy, while Prof Anne Fortune, Consultant Haematologist, Cancer Trials Ireland, provided an update on cancer trials. Ms Melissa Martin, Haematology Clinical Nurse Specialist, St James’s Hospital, Dublin, spoke about a pilot programme for ‘vaccination passports’ for CLL patients, and Ms Kluivert Boakye Duah, a postgraduate researcher at the Johnston Cancer Research Centre, Queen’s University Belfast, gave a presentation on the standardisation and quality control of Irish data on lymphoid blood cancers.
Additional vignettes included prospective immunophenotyping at referral by Dr Sam Grennan, St Vincent’s University Hospital, Dublin.
Keynote speakers included Prof Fréderic B Davi, Hôpitaux Universitaires Pitié Salpêtrière, Paris, France, whose talk was titled ‘A B cell receptor (BCR)-centric view of CLL’, and Prof Barbara Eichorst, Consultant Haematologist, Cologne, Germany, who provided an update on CLL guidelines and discussed new treatment approaches in Richter transformation.
Prof Davi touched on BCR as a biomarker of mutational status in CLL, and he also spoke about EuroClonality, an independent European scientific foundation dedicated to promoting innovation and standardisation in laboratory diagnostics in haemato-oncology.
EuroClonality, of which Prof Davi is a member of the steering group, places a special emphasis on clonality testing and supporting quality control and education in the field of laboratory diagnostics. It has also produced novel PCR assays for detection of immunoglobulin and T cell receptor gene rearrangements, which are now used widely in diagnosing lymphoproliferative disorders.
“IGHV mutational status by NGS is now a robust and reproducible methodology on cDNA and gDNA, and there is a very high success rate when combining a gDNA and cDNA strategy,” said Prof Davi.
“Of course this raises other questions, as interpretation of results might be difficult. We need to develop guidelines, including establishing new recommendations, and we need to provide dedicated education and training.”
Prof Eichorst discussed the development of CLL treatment, synopsised the evolution of guidelines in recent years, and reviewed data from trials on specific drug therapies that balanced continuous treatment regimens against limited-duration strategies.
She also spoke about the European Haematology Association (EHA) guidelines.
“There are two major changes to the EHA guidelines,” Prof Eichorst told the attendees. “We have included not only specialists in CLL, we have also included patient representatives who read the text and gave their input on the patient perspective, in particular how we should handle the watch-and-wait period, and this is really a major achievement for the guidelines.”
Another important update, Prof Eichorst explained, is the addition of the Magnitude of Clinical Benefit Scale for Haematological Malignancies (MCBS:H). Developed by the European Society for Medical Oncology (ESMO) and the EHA, this score is designed specifically for haematology and takes into account overall survival, progression-free survival, and quality of life.
“The MCBS scale differentiates between treatment that is curative and non-curative, and there are certain degrees of value of benefit from a new treatment compared to standard treatment,” she commented.
“The scale doesn’t only measure the improvement or progression-free survival, it also considers side effects, and I think that’s very important for informing our patients.”
“The MCBS scale differentiates between treatment that is curative and non-curative, and there are certain degrees of value of benefit from a new treatment compared to standard treatment”
Caring for CLL patients
President of the Irish Haematology Society Dr Amjad Hayat touched on the emotional burden that haematologists often have to deal with. Invited guest speaker Dr Sarah Noakes (PhD), Counselling Psychologist, St George’s University Hospitals NHS Foundation Trust, London, UK, addressed this important topic in her talk, ‘When care becomes heavy: Managing emotional load in CLL’.
She discussed the “emotional load” involved in treating patients with CLL over time, including recognising that load, and finding practical ways to deal with it. She described CLL care as “emotionally distinct” and “a long-distance walk rather than a sprint. There are going to be periods of watch-and-wait, punctuated by moments of intensity, relapse, treatment decisions, and disease progression,” said Dr Noakes.
“As clinicians, we have to stay emotionally engaged without any clear endpoint and walk along with our patients for years and years, in many cases.”
Dr Noakes presented case studies, vignettes, and posed interactive questions to the attendees on how they deal with emotional load, which could be answered via electronic audience polls. She also described the psychological processes that often create an excessive emotional load, including ‘boundary diffusion’, which involves navigating blurred lines between personal empathy and professional detachment; ‘moral distress’, which means experiencing conflict when patient care does not align with personal and ethical values; and ‘vicarious uncertainty’, when uncertainty in patient prognosis or outcomes causes emotional strain.
Reflective or peer support is an important element of dealing with emotional load, Dr Noakes explained. It is also crucial to “acknowledge and name any uncertainties” and set realistic boundaries and expectations.
“As clinicians, we all carry weight, but often that weight is invisible to our colleagues,” Dr Noakes concluded. “What we need to do is take that weight from being carried individually and invisibly, being absorbed without containment, to sharing it with multiple individuals who can hold that caring load. What ‘sustainable caring’ means is regulated engagement – it’s about how you stay present, how you stay thoughtful and humane without absorbing everything that passes through each clinical encounter that we have.”
The immune system
One of the keynote speakers at the 2026 Conference was Prof Arnon Kater, Consultant Haematologist and Chair of the HOVON Group at Amsterdam UMC in the Netherlands. Prof Kater delivered a talk titled ‘Merging clinical with the science on immunocompromise’.
He began the presentation by providing an overview of problems in immune dysregulation and a brief synopsis of current treatment guidelines.
“What we have seen from our trials is… if patients get complete remission, those patients seem to have a PFS advantage,” said Prof Kater.
“It’s a bit early to say if they have been ‘cured’ of their disease… but at least they have meaningful PFS…. The problem is that it was only possible [in trials] to reach this complete remission in 18 per cent of the patients, so if you don’t do good patient selection, or if you don’t know how to select, then you have a problem.”
He also discussed why it is that people with CLL have T cell complications.
“CLL is malignant – not extremely malignant, but still very active in communicating with its microenvironment and B cells. There are many types of differentiation from a B cell to a memory T cell, but it needs B cell help. It feels almost natural that if you have a disease with so many strange CLL cells, that there might be an impact on the T cells. But understanding exactly why that is and how to overcome it is something that we have been exploring for some years in the lab. Although we have some interesting leads, we still can’t answer exactly why these CLL cells do this.”
The prerequisites for metabolic plasticity include fuel availability, uptake capacity, intracellular fuel processing, and functional mitochondrial machinery, he told the conference.
He also pointed out that the more CLL cells a person has, the lower their T cell fitness is, and studies point to a form of “T cell exhaustion”.
Prof Kater described work to evaluate the role of lipids in cells. His research using microscopy shows that CLL cells have even more lipid droplets than normal T cells, and preliminary data indicates that there could be a problem with lipid utilisation.
“Accumulation of impaired, depolarised mitochondria correlates with T cell effector-skewed phenotype,” said Prof Kater.
“CLL T cells show a progressive shift towards hyper PI3K-AKT and diminished AMPK signalling, and ex vivo treatment with a PI3Kδ inhibitor reprogrammes CLL T cells into less-exhausted memory cells with improved mitochondrial activity, leading to improved expansion and persistence and long-term tumour control.”
Final thoughts
Speaking after the meeting, Dr Amjad Hayat lauded the selection of speakers and range of topics discussed at the conference, which he described as “amazing”.
“I am from an era when we used to have one meeting per year about haematology, but in general, groups were working independently, and all the physicians were working independently,” he said. “Great credit should go to Ruth [Prof Ruth Clifford], Patrick [Prof Patrick Thornton], and Carmel [Dr Carmel Waldron] for organising this on a national basis.
“With the way treatments have actually changed, we do need this for our support and theirs. We need groups like this that can work on behalf of both the patients and the physicians.”
Asked about the most pressing challenges in CLL care at the moment in Ireland, whether they be staffing, funding, diagnostics, or other considerations, Dr Hayat said: “All of the above.”
“But predominantly, it would be access to medication,” he said. “Historically, 30 years ago for example, if any drug was available, you could prescribe it in Ireland.
“Now, what has happened – for good reason – is that the [National Cancer Control Programme] has a drug approval system, but it is too slow, it is too restrictive, and frankly, the evidence that they look for is not consistent with the rest of the world. Our patients don’t get the treatment that the majority of the developed world would typically be getting.”
It is also important to acknowledge the role of industry in helping to facilitate important meetings of this kind, Dr Hayat commented.
“Things have changed,” he said. “Historically, when you find a compound that you needed to work, you needed phase 3 trials, so by the time you were finished, you had spent one to two billion, so the drug cost was extremely expensive.
“The buzzwords nowadays are ‘unmet need’ and ‘accelerated approval’, which the FDA actually uses. So, if you have a successful drug, or a potential drug, you show some evidence that it works and it’s safe, and then you take it to an accelerated programme to keep the costs down,” said Dr Hayat. “None of the universities, for example, have the money to make that kind of international effort, so industry is very important – without them, we wouldn’t have most of our drugs… the two [medicine and industry] have to work in a symbiotic relationship.”
Collaboration with patients, carers and advocates is also vitally important, he said.
“Haematology has always been at the cutting-edge of science; it is an amazing field”
“[In haematology] you see the patient, you go into the lab, you do all the tests and then put all of that information together and use it to diagnose the patient. Haematology has always been at the cutting-edge of science; it is an amazing field. Also remember that unlike many other fields, you are following that patient for the rest of their lives, so you, the patient, and their family actually become one unit.
“That can be taxing mentally, but it’s also a wonderful feeling to have that, and to know that you have done something really good for that patient.”
