Launch of ALAN Patient Preference Study

After almost 2 years of work, our patient preference study is now launched !


Obtaining a better understanding of the treatment outcomes that matter to people living with acute leukaemia can be useful to guide drug discovery, inform the appraisal of new treatments, and the development of managed access or outcomes-based payment schemes. To date, however, little quantitative preference research has been conducted in this context. This study could help to inform future treatment reimbursement decisions.


The overall aim of this study is to better understand the aspects of treatment that matter most to different groups of acute leukaemia patients. This evidence will help inform the evaluation of treatments now and in the future.

More specifically, the objectives are to:

  1. Better understand relative importance of different aspects of leukaemia treatments and their outcomes to individuals with acute leukaemia
  2. Better understand and characterise the heterogeneity in patients’ preferences based on observed patient characteristics
  3. Support future health technology assessments and promote access to future treatment options, based on the aspects that matter most to patients.

Patient profile

  • Age: 18+ y.o
  • All acute leukemias

ALAN is running one study in patients who are relapsed/ refractory and another study in newly diagnosed patients.


  • UK : Survey link –> click here 
  • US : Launch soon
  • EU4 (France, Germany, Italy, Spain)

Q2 2023: Additional information and data in acute leukemia


Ipilimumab plus decitabine for patients with MDS or AML in posttransplant or transplant-naïve settings: combination IPI + DEC treatment has an acceptable safety profile and has meaningful clinical activity in patients with R/R MDS/AML that does not appear to require T cell–mediated alloreactivity. IPI + DEC treatment may serve as a less-intensive bridge to transplant among potential transplant candidates. Future studies are warranted to identify rational IPI-based treatment strategies to generate prolonged responses without severe immune toxicity. (Ref:


Haploidentical hematopoietic cell transplantation with posttransplant cyclophosphamide (PTCy) graft-versus-host-disease (GVHD) prophylaxis yields a similar OS to HLA-matched unrelated donor (MUD) HCT with conventional prophylaxis. A study showed that despite a higher risk of relapse, younger donor haploidentical HCT with PTCy prophylaxis may be preferred over older MUD HCT with conventional prophylaxis in patients with ALL due to lower NRM and better OS. Further analysis comparing the effect of donor age in haploidentical PTCy vs MUD PTCy is warranted. (Ref.

To determine the prognostic significance of central nervous system leukemic involvement in newly diagnosed T-cell T-ALL, outcomes on consecutive, phase 3 clinical trials were examined. (Ref:

Key findings:

  • Patients with CNS-1 and CNS-2 status have similar outcomes across 2 large studies with divergent therapies, including with and without CRT.
  • Patients with CNS-3 T-ALL treated with nelarabine had similar OS as CNS-1 and CNS-2, and thus should receive nelarabine as standard of care.

Webinar: Latest advances in treatment of ALL and what it means for patients ?

This webinar was made possible as a joint initiative between three LePAF networks (CLLANALAN, and CMLAN) and the UK charity Leukaemia Care

This educational webinar gave an overview of how ALL is treated today and the significance of ’hot topics’ and key treatment development advances published and discussed at 2022 international hematology conferences.

This webinar may be useful for people affected by a diagnosis of ALL: patients, family members, supporters and advocates.

What is new and what does this mean for patients?


Dr Tobias Menne, Consultant Hematologist, Clinical Director for Research, Honorary Senior Lecturer Newcastle University (UK)

Anne – Pierre Pickaert, Patient Advocate, Acute Leukemia Advocates Network (FR)

Sophie Wheldon, Patient Advocacy Officer, Leukaemia Care (UK)


2022 Treatment advances in ALL



Webinar: Latest advances in treatment of AML and what it means for patients

This webinar was made possible as a joint initiative between three LePAF networks (CLLANALAN, and CMLAN) and the UK charity Leukaemia Care

This educational webinar gave an overview of how AML is treated today and the significance of ’hot topics’ and key treatment development advances published and discussed at 2022 international hematology conferences.

What is new and what does this mean for patients?


Dr Mike Dennis
Consultant Hematologist, The Christie NHS Foundation Trust (UK)

Anne -Pierre Pickaert
Patient Advocate, Acute Leukemia Advocates Network (FR)

Charlotte Martin
Patient Advocacy Manager, Leukaemia Care (UK)



Presentation ALAN and Leukaemia Care

Highlights in AML

This webinar can be useful for people affected by a diagnosis of AML: patients, family members, supporters and advocates.

Q1 2023: Additional information and data in acute leukemia


Intensive chemotherapy before alloHCT doesn not improve survivail in AML: data from the phase III ASAP trial presented at the 64th ASH Annual Meeting and Exposition showed no benefit to undergoing intensive remission induction chemotherapy before alloHCT compared to watchful waiting and sequential conditioning before alloHCT. (Ref: Schetelig J, Stelljes M, Middeke JM, et al. In patients with relapsed/refractory AML sequential conditioning and immediate allogeneic stem cell transplantation (allo-HCT) results in similar overall and leukemia-free survival compared to intensive remission induction chemotherapy followed by allo-HCT: results from the randomized phase III ASAP trial. Abstract #4. Presented at the 2022 American Society of Hematology Annual Meeting and Exposition; December 11, 2022; New Orleans, Louisiana.)

Co-mutation patterns allowed for updated risk stratification of NPM1-mutated AML: many patients with NPM1-mutated AML carry at least three gene mutations, and consideration of these co-mutational patterns is necessary for accurate risk stratification, according to data presented at the 64th ASH Annual Meeting and Exposition. (Ref: Hernández Sánchez A, Ramiro AV, Strang E, et al. Machine learning allows the identification of new co-mutational patterns with prognostic implications in NPM1 mutated AML – results of the European Harmony Alliance. Abstract #304. Presented at the 2022 American Society of Hematology Annual Meeting and Exposition; December 10, 2022; New Orleans, Louisiana).

Impact of IDH1 and IDH2 mutation detection at diagnosis and in remission in patients with AML receiving allogeneic transplantation: a study shows that the diagnostic presence of IDH mutations in AML did not have a strong prognostic impact following HSCT consolidation, the presence, especially of IDH1 R132 and IDH2 R172 mutations at higher MRD levels in remission, associated with an increased risk of relapse following HSCT (inferior outcomes). (Ref:

Enasidenob vs conventional care in older patient with late-stage mutant-IDH2 relapsed/refractory AML: the  open-label, randomized, phase 3 trial (NCT02577406) compared enasidenib, an oral IDH2 inhibitor with conventional care regimens in patients aged ≥60 years with late-stage, mutant-IDH2 AML R/R to 2 or 3 prior AML-directed therapies did not meet its primary study endpoint was not met, but OS was confounded by early dropout and subsequent AML-directed therapies. Enasidenib provided meaningful benefits in EFS, TTF, ORR, HI, and RBC-TI in this heavily pretreated older mutant-IDH2 R/R AML population. (Ref:

Early initiation of low-dose gilterinib maintenance impoves posttransplant outcomes in patients with R/R FLT3 mutated AML: A recent study showed preliminary but promising results for the early initiation of gilteritinib maintenance in patients with FLT3-mutated AML post-SCT in clinical practice. Despite poor patient backgrounds and MRD-positive peri-SCT statuses, early initiation of gilteritinib maintenance with reduced doses resulted in improved RFS and OS. Based on these results, we would suggest careful adjustments to the starting timing and dose modification of gilteritinib maintenance therapy for each patient to further improve the outcome of patients with R/R FLT3-mutated AML with residual MRD peri-SCT. Subsequent studies are warranted to validate our results and to elucidate the detailed mechanisms underlying our new insights. (Ref:

Acquired mutations in BAX confer resistance to BH3-mimetic therapy in AML:  Randomized trials in AML have demonstrated improved survival by the BCL-2 inhibitor venetoclax combined with azacitidine in older patients, and clinical trials are actively exploring the role of venetoclax in combination with intensive chemotherapy in fitter patients with AML. As most patients still develop recurrent disease, improved understanding of relapse mechanisms is needed. The study showed that acquired mutations in BAX during venetoclax-based therapy represent a novel mechanism of resistance to BH3-mimetics and a potential barrier to the long-term efficacy of drugs targeting BCL-2 in AML. (Ref.

Clinical outcomes associated with NMP1 mutations in R/R AML patients: Mutations in Nucleophosmin 1 (NPM1) are associated with a favorable prognosis in newly diagnosed AML, however, their prognostic impact in R/R settings are unknown. A recent study showed that AML with NPM1c is associated with poor outcomes at relapse but has no impact on the risk of relapse or death. The use of HI regimens and/or the addition of venetoclax to salvage therapy was associated with improved outcomes in patients with NPM1c in this setting. Combination strategies incorporating emerging novel therapies should be rapidly evaluated to further improve outcomes and long-term survival. (Ref:

A prospective, observational study enrolled patients presenting for treatment of AML at 13 institutions to analyze associations between hematopoietic cell transplantation (HCT) and survival, quality of life, and function in: the entire cohort, those aged ≥65 years, those with high comorbidity burden, intermediate cytogenetic risk, adverse cytogenetic risk, and first complete remission with or without measurable residual disease.

Key points:

  • Models adjusted for AML and patient-specific variables showed no benefit of allogeneic HCT in patients that are older or medically infirm.

  • Current practice of offering HCT to older and medically infirm patients with AML is not evidence based, which calls for randomized trials.



Use of the anti-CD19 bispecific T-cell engaging antibody blinatumomab given in conjunction with the tyrosine kinase inhibitor (TKI) dasatinib may provide an alternative to allogenic transplant for older adults with Ph+ALL. What was unique about the trial is that it strictly included patients older than 65 years, allowed comorbidities, and only one patient proceeded to allogenic transplant. Moreover, previous research used ponatinib in conjunction with blinatumomab, but ponatinib may not be a good option for older patients given its risk for cardiovascular events. (Ref. Advani AS, Moseley A, O’Dwyer KM, et al. Dasatinib/prednisone induction followed by blinatumomab/dasatinib in Ph+ acute lymphoblastic leukemia [published online, 2022 Nov 2]. Blood Adv. doi: 10.1182/bloodadvances.2022008216.

It was identified that CD22low/Bcl-2high is a dual-marker signature that reliably predicts poor response to Inotuzumab ozogamicin (InO). Furthermore, this approach also identifies dynamic changes of tumor composition after InO and suggests venetoclax as a promising drug with the potential for synergistic clinical efficacy, suggesting a patient-stratified approach for InO combinatorial treatments. (Ref:


Children living in poverty experience excessive relapse and death from newly diagnosed ALL. A recent study has shown that CAR T-cell therapy produces equivalent survival for children with r/r ALL, regardless of household poverty or neighborhood opportunity. Also CAR T-cell therapy may ameliorate factors influencing disparate outcomes observed in other treatment settings for children with ALL. (Ref:


An advanced practitioner-driven fertility preservation initiative introduced at a community oncology practice resulted in a more than two-fold increase in referrals for fertility preservation consultation with a reproductive endocrinologist among adolescents and young adults (AYAs, age 15-39) at risk for infertility. (Valdez C. Early identification for fertility preservation improves referrals in a community oncology practice. Presented at JADPRO Live 2022, Aurora, Colorado).


Trisomy-21 associated AML

ASH Podcasts 



GvHD Hub

Upcoming webinar: The importance of MRD in acute leukemia

We are pleased to announce that this May webinar is now open for registration. The webinar will be moderated and facilitated by leading patient advocates.

This educational webinar will give an overview on the importance of MRD in acute leukemia.

We will be joined by:

Prof. Dr. Med Michael Heuser
Chair for Molecular Therapies in Hematology Medizinische Hochschule Hannover

Anne-Pierre Pickaert
ALAN Steering Committee member


Monday 15th May 2023

4:00 pm – 5:00 pm CET

Link to register:

We hope to see you !

Upcoming webinar: How is the risk classification in AML driving treatment intensity ?


We are pleased to announce that this May webinar is now open for registration. The webinar will be moderated and facilitated by leading patient advocates.

This educational webinar will give an overview on how the risk classification in AML is driving treatment intensity. This will be based on data generated in the HARMONY project.

We will be joined by:

Prof. Dr.Med Lars Bulliger
Director of the Medical Department, Division of Hematology, Oncology, and Tumor Immunology
Charité – Universitätsmedizin Berlin

Jan Geissler
ALAN Steering Committee member


Monday 8th May 2023

5:00 pm – 6:00 pm CET

Link to register:

We hope to see you ! 

Q1 2023 Newsletter

We have just sent out our quarterly newsletter. And in case you have missed it, you can still find it here!

In this edition, we are sharing our recent publication giving interesting insights into quality of life of acute leukemia patients, also talking about AML World Awareness Day on 21st April. We also share news regarding our upcoming global summit in May and much more …

Read the newsletter here

Enjoy the reading ! 

And please do not hesitate to let Samantha if you have any questions, comments, feedback ! We would be more than happy to hear from you !

WECAN statement concerning recent reports about ECPC and the potential impact on EU research projects

For the past two decades, the European cancer patient community has worked hard to become competent, reliable, and trusted partners of researchers and policy makers. Through open collaboration, systematic capacity building, and active contributions to key European initiatives, pan-European cancer patient organisations have often been pioneers to make sure patients and carers have impact on the design and implementation of patient-relevant cancer research and policy.

Pan-European and international cancer patient organisations, connected through the Workgroup of European Cancer Patient Advocacy Networks (WECAN), as well as many of their member organisations, are deeply concerned about the alleged irregularities in the European Cancer Patient Coalition (ECPC) as reported in the media and as also previously experienced by patient organisations. Over the past two years, most pan-European patient organisations have been withdrawing their membership and distancing themselves from ECPC.

Malpractice by one organisation can impact the credibility of the whole patient community and its long-standing commitment to trusted and reliable partnerships.

The undersigned patient organisations would like to highlight the fact that what is happening in ECPC is not representative of the European patient community as a whole.

WECAN’s members feel it is our community’s responsibility to live up to the promise of being a reliable partner of research and policy makers. To mitigate negative impact on patient involvement in current EU projects and initiatives that may arise from ECPC’s crisis, and consequently, unintended impact on cancer patients, WECAN and its pan-European member organisations are available to discuss professional and action-oriented solutions to ensure continuity and meaningful patient involvement.

List of signatories here

Please feel free to contact us to discuss this.

ALAN Global Summit 5th-7th May 2023

We are looking forward to our first face to face Global Summit on the 05th to 07th May 2023. The venue will be the Leonardo Hotel Frankfurt City South (Isenburger Schneise 40, 60528 Frankfurt, Germany.Website here.

ALAN has worked to ensure that the global summit includes topics of importance to the acute leukemia patient community and provides a unique opportunity for participants to share experiences and best practices. We hope that as a result of this meeting patient groups globally will improve their capacity to meet the needs of their constituents and optimize their advocacy activities.


Please note that this is a draft agenda – More details to come.


Invitees are required to register by 31st March 2023 via the registration form at

There is a limit of a maximum of 1 participant from each organization.


ALAN will cover travel costs (upon presentation of a reimbursement form and receipts) with a maximum of 300€ for participants* travelling within Europe and a maximum of 1000€ for participants travelling overseas.

ALAN will cover all costs including attendance at the global summit, 2-4nights of accommodation (depending on flights) in a single room, catering, Internet access in the conference room, transport from/to airport to/from the summit venue (shuttle), etc.

It will not cover incidental costs like the bar, mini-bar, phone calls, taxi costs, upgrades for double rooms, relatives attending the conference, and any other non-official activities.

*Sponsors attend the summit for free but are required to cover their flights, transports (if they wish to take taxis) and accommodation costs.


Please make sure that you have valid travel documents for at least 6 months from the day of travel.

Before travelling to Germany, please check whether you need a visa.

A list of third countries whose nationals must hold a short-stay visa is available on the following link:


Germany is a member of the European Union. A Schengen-visa is required to enter the country.

Do not wait for the last minute and start applying for your visa NOW (all in all, obtaining a visa for Germany can take up to 90 days).

On the official website of the  you will find all relevant information on the requirement of a visa.

Please remember that most of your questions can be answered at the German Embassy in your country or another Embassy that represents Germany. Please ensure you read all the information in relation to visa.


The Acute Leukemia Global Summit starts on Friday 5th May 2023 at 1pm with the official opening from our chair, Zack Pemberton-Whiteley and ends on Sunday, 07th May at 12:00pm. The program features renowned acute leukemia experts as well as other medical specialists and advocacy leaders from around the world.


In case of questions, you can contact Samantha and Christine

We look forward to seeing you all in Frankfurt and of course please do not hesitate to contact us if you have any questions at all.