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iwCLL 2025 | The development of resource-restricted guidelines for the diagnosis and management of CLL

In this interview, Mazyar Shadman, MD, Fred Hutchinson Cancer Research Center, Seattle, WA, provides insight into the development of resource-restricted guidelines for the diagnosis and management of chronic lymphocytic leukemia (CLL). Dr Shadman highlights the need for tailored recommendations for different regions with varying access to diagnostic and therapeutic options, emphasizing the importance of involving local experts in writing these guidelines. He also mentions a second project, which is aiming to provide guidance on resource allocation to healthcare authorities and decision-making bodies. This interview took place at the biennial International Workshop on Chronic Lymphocytic Leukemia (iwCLL) 2025 in Krakow, Poland.

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Transcript

So during the iwCLL meeting, we are happy to announce that the working group at the iwCLL on resource-restricted guidelines is going to start working after the approval of the board of the iwCLL. So the idea is we’re working on two different projects. 

First, we realized that there are a number of diagnostic and therapeutic options for CLL, but unfortunately these options are now limited to certain areas of the world and some specific countries...

So during the iwCLL meeting, we are happy to announce that the working group at the iwCLL on resource-restricted guidelines is going to start working after the approval of the board of the iwCLL. So the idea is we’re working on two different projects. 

First, we realized that there are a number of diagnostic and therapeutic options for CLL, but unfortunately these options are now limited to certain areas of the world and some specific countries. So when it comes to many of the countries where CLL patients are still in need of diagnostic and therapeutic options, those options are either unavailable or if they’re available our colleagues only have access to a limited number of these treatments. So this means that the guidelines that we use, for example, in the US, in the UK, Australia, or Europe are not applicable to our colleagues who practice in those settings because we write those guidelines assuming that there is full access to these agents and the diagnostic tests. 

So the idea here for the resource-focused guidelines, or I should say recommendations and not guidelines, is to define different tiers of access and then try to provide recommendations on how to utilize different treatment options or diagnostic options, depending on what level of access is available in each area. So the idea is to have colleagues from those areas actually have the major role in writing those recommendations and, of course, this will be a teamwork that we’ll have a combination of colleagues from countries with more access to those agents joining, but really the expectation and our goal is to have really the colleagues who practice in those settings really drive the main kind of message and the recommendation that will come out of it. So this is our first project, this is again focused on providers and physicians or colleagues who work on diagnostics and CLL. 

There is a second effort that we’ll also start working on, and that’s providing guidance on how to use resources. And this is mainly for, let’s say, healthcare authorities and people who are at the decision-making level. And the idea is that we would like to have a priority list. So if there is limited resource, how’s the best way of using it for CLL, either for diagnostic purposes or for therapeutic purposes. So there’s a lot of work that will be done to define what would be the number one or number two diagnostic or prognostic test that we would need to have in order to provide the best care for CLL patients. And also, if you have limited resources and we have, let’s say, the possibility of bringing one or two drugs to our country or to the area that we have the health authority, what are the different characteristics of those treatment options? And then they can make the decision in terms of having the treatment available that would benefit most patients. 

So these are two important efforts and I’m very happy that the board has approved these efforts and we will have a presentation at the meeting to basically let everybody know that we will start working on those two important projects. On top of that, we will also announce an important survey that we will be soon distributing to hopefully all countries. And the idea is to have an understanding of what is the level of access to, again, diagnostic, prognostic markers, and also therapeutic options. And that will hopefully give us a good understanding of the current benchmark. And with all that, the idea is to hopefully give the message out that access is limited and hopefully in future we can make it better. And maybe in future meetings, we can have another report showing that our access has improved. But I think it’s important to have that voice heard, and we believe that by generating that data, we will be able to show it in a form of a presentation and hopefully publication that there is a critical need for improving access to all these great options that we have for CLL patients.

 

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Disclosures

Consulting, advisory boards, steering committees, or data safety monitoring committees: AbbVie, Genentech, AstraZeneca, Genmab, Janssen, BeiGene/BeOne Medicines, Bristol Myers Squibb, Morphosys/Incyte, Kite Pharma, Eli Lilly, Fate Therapeutics, Nurix, Merck, Pfizer, Pierre Fabre; Research funding: Mustang Bio, Genentech, AbbVie, Beigene/BeOne Medicines, Astra-Zeneca, Genmab, Morphosys/Incyte, Vincerx; Stock options: Koi Biotherapeutics; Employment (spouse): Bristol Myers Squibb