Why is evidence-based advocacy important ?

Journal articles

2023

Pemberton-Whiteley Z, Nier S, Geissler J, Wintrich S, Verhoeven B, Christensen RO, Salek S, Oliva EN, Ionova T, Bradley J. Understanding quality of life in patients with acute leukemia, a global survey. 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

2024

Samantha Nier, Zack Pemberton-Whiteley, David Mott, Jake Hitch and Chris Skedgel: Patient Preferences for Treatment in Relapsed/Refractory Acute Leukemia in the United Kingdom,  Abstract code: P1695

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: Patient-Reported Experience of Being Diagnosed with Leukemia: A Global Study, Abstract code P1682

Esther Oliva, Tatyana Ionova, Samantha Nier, Zack Pemberton-Whiteley, Nick York, Denis Costello, Sam Salek: Disease and Treatment Burden In Patients with Leukemia: Family Members/Partner Perspective, Abstract code P1669

2023

Zack Pemberton-Whiteley, Samantha Nier, David Mott, Chris Skedgel and Jake Hitch, Understanding Relapsed/Refractory Acute Leukemia Patients Treatment Preferences: Insights from Qualitative Research, Blood (2023) 142 (Supplement 1): 3730. https://doi.org/10.1182/blood-2023-172871

Samantha Nier; Zack Pemberton-Whiteley; Dr Abhishek Mangaonkar, A Study to Demonstrate Impact of Active Referral of Acute Leukemia Patients and Families to Patient Organization at Diagnosis, Blood (2023) 142 (Supplement 1): 7412. https://doi.org/10.1182/blood-2023-173421

Samantha Nier, Zack Pemberton-Whiteley,  Jan Geissler,  Anne-Pierre Pickaert,  Sophie Wintrich,  Cheryl Petruk,  Esther Nathalie Oliva,  Tatyana Ionova,  Sam Salek, Living with acute leukemia: A global survey of patients and carers experience.  2023 Aug; 7(Suppl ): e828458b. Published online 2023 Aug 8. doi: 10.1097/01.HS9.0000973624.82845.8b

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, Experiences and views of leukemia carers: A global survey. 2023 Aug; 7(Suppl ): e038702e. Published online 2023 Aug 8. doi: 10.1097/01.HS9.0000977368.03870.2e)

2022

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: Experiences and Views of Leukemia Patients: A Global Survey, Blood (2022) 140 (Supplement 1): 5258–5259. https://doi.org/10.1182/blood-2022-163309

Zack Pemberton-Whiteley, Samantha Nier, Jan Geissler, Sophie Wintrich, Anne-Pierre Pickaert, Sam Salek, Esther Natalie Oliva, Tatiana I. Ionova, Jennie Bradley: Differences in experiences reported by patients with acute and chronic leukemia: A global survey, Blood (2022) 140 (Supplement 1): 13273–13275. https://doi.org/10.1182/blood-2022-163466 

2020

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 Identifying factors associated with variations in quality of life for patients with different acute leukemia types: A global survey  Abstract release date: 05/14/20) EHA Library. Pemberton-Whiteley Z. 06/12/20; 294246; EP1766.

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: Investigating the Quality of Life of Patients with Acute Leukemia, with a Focus on Age and Patient-Reported Experience, Blood (2020) 136 (Supplement 1): 25–26. https://doi.org/10.1182/blood-2020-141293

2019

Zack Pemberton-Whiteley, Esther Natalie Oliva, MD, Jan Geissler, Sophie Wintrich, Sam Salek, Tatyana Ionova, Anne Rosemary Tate, Jennie Bradley: Identifying Differences in the Quality of Life of Patients with Acute Leukemia: A Global Survey, Blood (2019) 134 (Supplement_1): 4785. https://doi.org/10.1182/blood-2019-128818

Publications from projects in which ALAN is involved

2024

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, Patient-reported outcomes of CAR T-cell therapy: an international European study evaluating patients’ experiences, quality of life and unmet care needs – Abstract Code P1683

2023

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, Impact-AML: A European Master Framework for Cohort Studies and Pragmatic Clinical Trials in Relapse or Refractory Acute Myeloid Leukemia, Blood (2023) 142 (Supplement 1): 1533. https://doi.org/10.1182/blood-2023-184745.

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, Personalizing precision medicine: Patients with AML perceptions about treatment decisions, Patient Education and Counseling, https://doi.org/10.1016/j.pec.2023.107883

Personalizing precision medicine: patients with AML perceptions about treatment decisions

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: Improving the CAR T-cell treatment journey and access to CAR T-cell therapy across Europe, presented at EBMT-EHA 5th European CAR T-cell Meeting.

147_CART23_Pennings

2022

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: Pan-Stakeholder Core Outcome Set (COS) Definition for Hematological Malignancies within the Framework of Harmony and Harmony PLUS Projects, Blood (2022) 140 (Supplement 1): 5285–5287. https://doi.org/10.1182/blood-2022-157549

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