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ALAN/CLLAN/CMLAN - 2021 Global Leukemia Experience Survey - Executive Summary Journal articles
2025
Disease and treatment burden in patients with leukaemia family memberspartner perspective, Oliva EN, Ionova T, Nier S, Pemberton-Whiteley Z, York N, Costello D and Salek S, Front. Hematol. 4:1570055. doi: 10.3389/frhem.2025.1570055
Patient Involvement in Health Technology Assessments: Lessons for EU Joint Clinical Assessments, Anne-Pierre Pickaert on behalf on Acute Leukemia Advocates Network, J. Mark. Access Health Policy 2025, 13, 38. https://doi.org/10.3390/jmahp13030038
Impact of leukemia subtype and demographics on patient quality of life in 76 countries: a cross-sectional study, Salek S, Nier S, Pemberton-Whiteley Z, Ionova T, Ianni G, Tripepi G, York N, Schroeter N, Huntley K, Rynne M, Costello D, Pecova L and Oliva EN (2025), Front. Hematol. 3:1502166. doi: 10.3389/frhem.2024.1502166
2024
Patient Preferences for Treatment in Relapsed/Refractory Acute Leukemia in the United Kingdom: A Discrete Choice Experiment, Mott DJ, Hitch J, Nier S, Pemberton-Whiteley Z, Skedgel C. Patient Prefer Adherence. 2024;18:1243-1255 https://doi.org/10.2147/PPA.S44253 or Patient Preferences for Treatment in Relapsed/Refractory Acute Leukemia in the United Kingdom: A Discrete Choice Experiment – PubMed (nih.gov)
2023
Understanding quality of life in patients with acute leukemia, a global survey, Pemberton-Whiteley Z, Nier S, Geissler J, Wintrich S, Verhoeven B, Christensen RO, Salek S, Oliva EN, Ionova T, Bradley J. J Patient Cent Res Rev. 2023;10:21-30 https://institutionalrepository.aah.org/jpcrr/vol10/iss1/3/ or https://pubmed.ncbi.nlm.nih.gov/36714002/
Abstracts
2025
Patient involvement in the design of ALIDHE: a study of ivosidenib + azacitidine in newly diagnosed IDH1mutant AML. Nier, S., Pelouchova, J., Hills, R., Salek, S., Derrien, H., Chatin, S., … Vyas, P. (2025). Future Oncology, 1–7. https://doi.org/10.1080/14796694.2025.2587002
ALIDHE phase 3b study design: ivosidenib + azacitidine in adults with newly diagnosed IDH1mutant acute myeloid leukemia. Vyas, P., Salek, S., Vives, S., Recher, C., Döhner, H., Venditti, A., … Nier, S. (2025). Future Oncology, 1–9. https://doi.org/10.1080/14796694.2025.2567838
Investigating the Importance of EQ-5D Domains and Two Bolt-On Items: How Do the Preference of People With Acute Leukemia Differ from the General Population ? Mott DJ, Hussain H, Chowdhury S, Nier S, and Skedgel C, Poster presented at ISPOR 2025
Regional influences on quality of life in leukaemia patients: uncovering key predictors for personalised care. Sam Salek, Sarah Gunn, Aj Poots, Esther Oliva, Tatyana Ionova, Samantha Nier, Abstract 4961, ISOQOL 2025 Abstract
Assessment of the Impact of Demographics, Information Provision, and Involvement in Treatment Decision on Leukaemia Patients’ Quality of Life: Primary Analysis of Global Study Data, Samantha Nier, Sarah Gunn, AJ Poots, Esther Natalie Oliva, Tatyana Ionova, Sam Salek (Abstract release date: 05/14/25) EHA Library. Nier S. 06/14/2025; 4159405; S328
Understanding of the Perspectives and Preferences of Informal Carers of People with Acute Leukemia: Insights from a Qualitative Study, Samantha Nier, Nadine Henderson, Priscila Radu, Chris Theakston, David Mott (Abstract release date: 05/14/25) EHA Library. Nier S. 06/13/2025; 4159695; PF1283
Understanding the Preferences of People with Acute Leukemia for Different Health Outcomes, Samantha Nier, Sulayman Chowdhury, Chris Skedgel, David Mott (Abstract release date: 05/14/25) EHA Library. Nier S. 06/14/2025; 4161376; PS2302
Investigating the Key Predictors of Quality of Life in Leukaemia Patients: Analysis of Global Study Data using Gradient Boosted Decision Trees, Sam Salek, Sarah Gunn, AJ Poots, Esther Natalie Oliva, Tatyana Ionova, Samantha Nier (Abstract release date: 05/14/25) EHA Library. Salek S. 06/14/2025; 4161364; PS2290
2024
Experiences and Preferences of Acute Leukemia Caregivers: A Qualitative Study, Nadine Henderson, Claud Theakston, Priscila Radu, Samantha Nier, David Mott, Blood (2024) 144 (Supplement 1): 7901. https://doi.org/10.1182/blood-2024-200007
Patient Preferences for Treatment in Relapsed/Refractory Acute Leukemia in the United Kingdom, Samantha Nier, Zack Pemberton-Whiteley, David Mott, Jake Hitch and Chris Skedgel, (Abstract release date: 05/14/24) EHA Library. Nier S. 06/13/2024; 419782; P1695
Patient-Reported Experience of Being Diagnosed with Leukemia: A Global Study, Samantha Nier, Zack Pemberton-Whiteley, Nick York, Kathryn Huntley, Michael Rynne, Lidija Pecova, Denis Costello, Sarah Gunn, Esther Natalie Oliva, Tatiana I. Ionova, Sam Salek: (Abstract release date: 05/14/24) EHA Library. Nier S. 06/13/2024; 419769; P1682
Patient Involvement in the Trial Design of Alidhe: A phase 3B of Ivosidenib + Azacitidine in Patient with Newly Diagnosed IDH1 Mutant AML, Samantha Nier, Anne-Pierre Pickaert, Jana Pelouchova, Ralph Hills, Sam Salek, Hélène Derrien, Stéphanie Chatin, Anne-Marie De La Bigne, Susana Vives, Christian Recher, Hartmut Döhner, Adriano Venditti, Paresh Vyas: Abstract release date: 05/14/24) EHA Library. Nier S. 06/13/2024; 421177; PB2430
Disease and Treatment Burden in Patients with Leukemia: Family Members / Partner Perspective, Esther Oliva, Tatyana Ionova, Samantha Nier, Zack Pemberton-Whiteley, Nick York, Denis Costello, Sam Salek, (Abstract release date: 05/14/24) EHA Library. Oliva E. 06/13/2024; 419756; P1669
2023
Understanding Relapsed/Refractory Acute Leukemia Patients Treatment Preferences: Insights from Qualitative Research, Zack Pemberton-Whiteley, Samantha Nier, David Mott, Chris Skedgel and Jake Hitch, Blood (2023) 142 (Supplement 1): 3730. https://doi.org/10.1182/blood-2023-172871
A Study to Demonstrate Impact of Active Referral of Acute Leukemia Patients and Families to Patient Organization at Diagnosis, Samantha Nier; Zack Pemberton-Whiteley; Dr Abhishek Mangaonkar, Blood (2023) 142 (Supplement 1): 7412. https://doi.org/10.1182/blood-2023-173421
Living with acute leukemia: A global survey of patients and carers experience. Samantha Nier, Zack Pemberton-Whiteley, Jan Geissler, Anne-Pierre Pickaert, Sophie Wintrich, Cheryl Petruk, Esther Nathalie Oliva, Tatyana Ionova, Sam Salek, 2023 Aug; 7(Suppl ): e828458b. Published online 2023 Aug 8. doi: 10.1097/01.HS9.0000973624.82845.8b
Experiences and views of leukemia carers: A global survey. Samantha Nier, Zack Pemberton-Whiteley, Nick York, Kathryn Huntley, Deborah Baker, Michael Rynne, Nicole Schroeter, Denis Costello, Lidija Pecova, Esther Natalie Oliva, Tatyana Ionova, Sam Salek, 2023 Aug; 7(Suppl ): e038702e. Published online 2023 Aug 8. doi: 10.1097/01.HS9.0000977368.03870.2e)
2022
Experiences and Views of Leukemia Patients: A Global Survey, Zack Pemberton-Whiteley, Samantha Nier, Nick York, Deborah Baker, Michael Rynne, Nicole Schroeter, Denis Costello, Lidija Pecova, Esther Natalie Oliva, Tatiana I. Ionova, Sam Salek, Jennie Bradley, Blood (2022) 140 (Supplement 1): 5258–5259. https://doi.org/10.1182/blood-2022-163309
Differences in experiences reported by patients with acute and chronic leukemia: A global survey, Zack Pemberton-Whiteley, Samantha Nier, Jan Geissler, Sophie Wintrich, Anne-Pierre Pickaert, Sam Salek, Esther Natalie Oliva, Tatiana I. Ionova, Jennie Bradley: Blood (2022) 140 (Supplement 1): 13273–13275. https://doi.org/10.1182/blood-2022-163466
2020
Identifying factors associated with variations in quality of life for patients with different acute leukemia types: A global survey. Zack Pemberton-Whiteley, Jan Geissler, Sophie Wintrich, Rita O. Christensen, Bregje Verhoeven, Samantha Nier, Esther Oliva, Sam Salek, Tatyana Ionova, Anne Rosemary Tate, Jennie Bradley Abstract release date: 05/14/20) EHA Library. Pemberton-Whiteley Z. 06/12/20; 294246; EP1766.
Investigating the Quality of Life of Patients with Acute Leukemia, with a Focus on Age and Patient-Reported Experience, Zack Pemberton-Whiteley, Samantha Nier, Jan Geissler, Sophie Wintrich, Bregje Verhoeven, Rita O. Christensen, Sam Salek, Esther Natalie Oliva, Tatyana Ionova, Jennie Bradley, Anne Rosemary Tate: Blood (2020) 136 (Supplement 1): 25–26. https://doi.org/10.1182/blood-2020-141293
2019
Identifying Differences in the Quality of Life of Patients with Acute Leukemia: A Global Survey, Zack Pemberton-Whiteley, Esther Natalie Oliva, MD, Jan Geissler, Sophie Wintrich, Sam Salek, Tatyana Ionova, Anne Rosemary Tate, Jennie Bradley: Blood (2019) 134 (Supplement_1): 4785. https://doi.org/10.1182/blood-2019-128818
Publications from projects in which ALAN is involved
2025
Reduce bureaucracy in clinical trials now; Martin Dreyling, Sara Badreh Wirström, Wolfgang E. Berdel, Natacha Bolaños, Sarah Collen, Loris Brunetta, Sharon Deveson Kell, Jeanette Doorduijn, Tarec Christoffer El-Galaly, Ricardo J. O. Ferreira, Marcela Fajardo-Moser, Alan G. Fraser, Christian Gisselbrecht, Kate Hill, Sanja Kolaček, Denis Lacombe, Marieke Meijer, Richard Mindham, Samantha Nier, Richard Price, Natalia Ramírez Comet, Johanna Tassot, Christoph Wanner & Robin Doeswijk; Nat Med (2026). https://doi.org/10.1038/s41591-025-04055-1
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Patient-reported outcomes in patients with hematologic malignancies treated with CAR T-cell therapy in Europe, Elise R. A. Pennings, Anne M. Spanjaart, Frederick W. Thielen, Simone Oerlemans, Anna Fleischer, Carmen Sanges, Maria Gomes Da Silva, Yolanda Cabrerizo, Pacôme Lecot, Lutgart Roux-Opstaele, Caroline Dreuillet, Eglys Gonzalez-Marcano, Olga Millán, Ulrich Jaeger, Julio Delgado, Maik Luu, Barbara Huber, Margot Lorrain, Mariana Pina, Andreas Kremer, Natacha Bolaños, Solène Clavreul, Samantha Nier, Roberto D. K. Liu, Birgit I. Lissenberg-Witte, Sébastien Anguille, Marie Robin, Emma C. Morris, Anna Sureda, Marie Préau, Myriam Pannard, Geertruida H. De Bock, Scott S. Wagers, Hélène Negre, Delphine Maucort-Boulch, Michael Hudecek, Carin A. Uyl-de Groot, Marie José Kersten, Blood Adv (2025) 9 (24): 6380–6393. https://doi.org/10.1182/bloodadvances.2025017081
Fitness assessment in acute myeloid leukemia: recommendations from an expert panel on behalf of European Leukemia Net; Adriano Venditti, Raffaele Palmieri, Luca Maurillo, Christoph Röllig, Agnieszka Wierzbowska, David de Leeuw, Fabio Efficace, Antonio Curti, Lok Lam Ngai, Jesse Tettero, Lionel Adès, Antonio Almeida, Lars Bullinger, Mike Dennis, Jordi Esteve, Felicetto Ferrara, Michael Heuser, Gerwin Huls, Michael Lübbert, Priyanka Mehta, Pau Montesinos, Thomas Pabst, Christian Récher, Giuseppe Rossi, Nigel Russell, Jorge Sierra, Reinhard STAUDER, Norbert Vey, Roland Walter, Eunice Wang, Samantha Nier, Carolina Martins, and Gert Ossenkoppele, Blood Adv bloodadvances.2024013744. https://doi.org/10.1182/bloodadvances.2024013744
Lay language report for Patients and Caregivers FITNESS ASSESSMENT IN ACUTE MYELOID LEUKEMIA
Recommendations + Guiding Questions (Patients and Caregivers)
Recommendations + Guiding Questions (Physicians)
European Cancer Organisation Essential Requirements for Quality Cancer Care: Hematological malignancies, John G. Gribben, Leticia Quintanilla-Martinez, Simon Crompton, Jann Arends, Christophe Bardin, Heiko Becker, Frederic Castinetti, Dégi L. Csaba, Melvin D’Anastasi, Thomas Frese, Jan Geissler, Reda Matuzeviciene, Marius E. Mayerhoefer, Rui Medeiros, Kate Morgan, Šarūnas Narbutas, Samantha Nier, Umberto Ricardi, Eugenia Trigoso Arjona, Mehmet Ungan, Lorna Warwick, Emanuele Zucca, Hemasphere. 2025 Mar 31;9(4):e70108. https://doi.org/10.1002/hem3.70108
Patient Reported Outcomes of CAR T-cell Therapy: A European Study Evaluating Patient’s Experiences, Quality of Life and Unmet Care Needs – Zooming in on Social Wellbeing, Pennings, E.R.A.; Spanjaart, A.M.; Thielen, F.W.; Fleischer, A.; Sanges, C.; Gomes Da Silva, M.; Cabrerizo, Y.; Lecot, P.; Roux- Opstaele, L.; Dreuillet, C.; Gonzalez, E.; Millán, O.; Jaeger, U.; Delgado, J.; Luu, M.; Huber, B.; Lorrain, M.; Pina, M.; Kremer, A.; Bolaños, N.; Clavreul, S.; Nier, S.; Liu, R.D.K.; Anguille, S.; Robin, M.; Morris, E.C.; Sureda, A.; Préau, M.; Pannard, M.; De Bock, G.H.; Wagers, S.S.; Negre, H.; Maucort Boulch, D.; Oerlemans, S.; Hudecek, M.; Uyl-de Groot, C.A.; Kersten, M.J. Oral presentation EHA-EBMT 7th European CAR T-cell Meeting
Patient Reported Outcomes of CAR T-cell Therapy
How to implement more patient-friendly Informed Consent Forms in CAR T-Cell clinical studies: survey results among patients, investigators, and study sponsors; C. Sanges, L. Roux-Opstaele; E. Pennings, B. Huber, M. Dreyling, N. Bolanos, S. Clavreul, S. Nier, M.C. Hollerith, J. Clark, D. Henderson, L. Brunetti, J.K. Doorduijn, C. Dreuillet, Y. Cabrerizo, A. Fleischer, O. Millan, E. Gonzalez, M. Hudecek, M.J. Kersten, Poster presentation EHA-EBMT 7th European CAR T-cell Meeting.
How to implement more patient-friendly Informed Consent Forms in CAR T-Cell clinical studies
Patient-reported outcomes among patients with haematologic malignancies treated with chimeric antigen receptor (CAR) T-cell therapy or bispecific T-cell engagers: A systematic literature review, Celine Broekhuizen, Anne Spanjaart, Marie José Kersten, Susanne Singer, Marija Stanić Damic, Andrej Belančić, Maria Gomes da Silva, Catriona Parker, Natacha Bolaños, Eilidh Duncan, Samantha Nier, Lonneke van de Poll-Franse, Charalampia Kyriakou, Simone Oerlemans
Abstract Dutch Hematology congress
2024
Understanding the challenges around implementing PROMs for patients receiving novel immunotherapies in haematology. Duncan E, Joyner K, Broekhuizen C, Kyriakou C, Nier S, Oehrlein E, Oerlemans S, Reese E, Morgan K
Patient-reported outcomes of CAR T-cell therapy: an international European study evaluating patients’ experiences, quality of life and unmet care needs, Elise R.A. Pennings, Anne Mea Spanjaart, Frederick W. Thielen, Anna Fleischer, Carmen Sanges, Maria Gomes Da Silva, Yolanda Cabrerizo, Pacôme Lecot, Caroline Dreuillet, Eglys Gonzalez, Ulrich Jaeger, Julio Delgado, Maik Luu, Margot Lorrain, Mariana Pina, Andreas Kremer, Natacha Bolaños, Solène Clavreul, Samantha Nier, Roberto D.K. Liu, Sébastien Anguille, Marie Robin, Emma C. Morris, Anna Sureda, Simone Oerlemans, Marie Préau, Myriam Pannard, Geertruida H. De Bock, Scott S. Wagers, Hélène Negre, Delphine Maucort, Boulch, Michael Hudecek, Carin A. Uyl-de Groot, Marie José Kersten, – Abstract Code P1683
2023
Impact-AML: A European Master Framework for Cohort Studies and Pragmatic Clinical Trials in Relapse or Refractory Acute Myeloid Leukemia, Giovanni Marconi, Petros Kountouris, Jiri Mayer, Lars Bullinger, Dirk Reinhardt, Pau Montesinos, Pietro Merli, Marco Vignetti, Jos Dumortier, Jesus Maria Hernandez-Rivas, Michael Heuser, Rolandas Gerbutavicius, Antonio Francesco Maturo, Gianni D’Errico, Samantha Nier, Chiara Zingaretti, Irene Azzali, Federica Campacci, Maria Del Mar Maria-Pereira, Franco Locatelli, Rudiger Hehlmann, Dietger W. Niederwieser, and Giovanni Martinelli, Blood (2023) 142 (Supplement 1): 1533. https://doi.org/10.1182/blood-2023-184745.
Personalizing precision medicine: Patients with AML perceptions about treatment decisions, A. Grauman, M. Kontro, K. Haller, S. Nier, S. Aakko, K. Lang, C. Zingaretti , E. Meggiolaro, S. De Padova, G. Marconi, G. Martinelli , C. A. Heckman, G. Simonetti, L. Bullinger, U. Kihlbom, Patient Education and Counseling, https://doi.org/10.1016/j.pec.2023.107883
Personalizing precision medicine: patients with AML perceptions about treatment decisions
Improving the CAR T-cell treatment journey and access to CAR T-cell therapy across Europe, E. Pennings , Y. Cabrerizo , P. Lecot , C. Sanges , F. Thielen , U. Jaeger , J. Delgado , A. Kremer , M. Hudecek , M. Luu , N. Bolaños , S. Clavreul , A. Kienesberger , S. Nier , S. Sheth , L. Gambotti , C. Dreuillet , H. Negre , C. Uyl-de Groot , C. Girvalaki , M.J. Kersten , On behalf of the T2Evolve (IMI) consortium: presented at EBMT-EHA 5th European CAR T-cell Meeting.
2022
Pan-Stakeholder Core Outcome Set (COS) Definition for Hematological Malignancies within the Framework of Harmony and Harmony PLUS Projects, Katharina M Lang, Tamás Bereczky, Jan Geissler, Natacha Bolanos, Kathryn E. Morgan, Ananda Plate, Ana Vallejo, Sophie Wintrich, Nick York, Peter Loffelhardt, Brian Huntly, Pieter Sonneveld, Mario Boccadoro, Valeria Santini, Šárka Pospíšilová, Andreas Hochhaus, Tiziano Barbui, Peter Borchmann, Christian Buske, Yann Guillevic, Frederico Calado, Katy Harrison, Dalia Dawoud, Guillermo Sanz, Jesús María Hernández, Ellen De Waal, Martje Barbus, Renate Schulze-Rath, Lars Bullinger: Blood (2022) 140 (Supplement 1): 5285–5287. https://doi.org/10.1182/blood-2022-157549