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Journal Articles

Which pediatric ITP patients will go on to lupus?

Clinical Trials & Observations
Ellis J. Neufeld
Journal: Blood
Blood (2024) 143 (16): 1553–1554.
https://doi.org/10.1182/blood.2023023663
Published: 2024
Journal Articles

A Phase 3 Study of Eltrombopag Vs. Standard First-Line Management for Newly Diagnosed Immune Thrombocytopenia in Children: Trial in Progress Update

Amanda B. Grimes, Rachael F. Grace, Melissa J. Rose, Sanjay J. Shah, Shipra Kaicker, Carolyn Bennett, Michael Briones, Taizo A. Nakano, Stephanie A. Fritch Lilla, Jeffrey D. Lebensburger, Alexis A. Thompson, Rukhmi Bhat, Rohith Jesudas, Michele P. Lambert, Shelley E. Crary, Kerry Hege, Cathy A. Lee-Miller, Suvankar Majumdar, James B. Ford, Joshua J. Bies, Vandy Black, John Fort, Manpreet Kochhar, Julia MW Wong, Bogdan Dinu, Pei-Chi Kao, Wendy B. London, Jenny M. Despotovic, Robert J. Klaassen, Ellis J. Neufeld, Cindy Neunert, Kristin A. Shimano
Journal: Blood
Blood (2023) 142 (Supplement 1): 1223.
https://doi.org/10.1182/blood-2023-172819
Published: 2023
Journal Articles

Reduced Dosing Frequency Following a Switch to Rix-FP for the Treatment of Hemophilia B: Results from the Athn 2 Study

Janna Journeycake, Dunlei Cheng, Tammuella Chrisentery-Singleton, Vidhi Desai, Annette von Drygalski, Carol Fedor, Nikki Hirsh, Birju Patel, Leslie J. Raffini, Michael Recht, Robert F. Sidinio, Jr., Michael Wang, Xiang Zhang, Ellis J. Neufeld
Journal: Blood
Blood (2021) 138 (Supplement 1): 1039.
https://doi.org/10.1182/blood-2021-144617
Published: 2021
Journal Articles

The cost-effectiveness of gene therapy for severe hemophilia B: a microsimulation study from the United States perspective

Nancy S. Bolous, Yichen Chen, Huiqi Wang, Andrew M. Davidoff, Meenakshi Devidas, Timothy W. Jacobs, Michael M. Meagher, Amit C. Nathwani, Ellis J. Neufeld, Bryan A. Piras, Carlos Rodriguez-Galindo, Ulrike M. Reiss, Nickhill Bhakta
Journal: Blood
Blood (2021) 138 (18): 1677–1690.
https://doi.org/10.1182/blood.2021010864
Published: 2021
Includes: Supplemental data
Journal Articles

Dosing, Patient Satisfaction and Other Patient-Reported Outcomes after Switching to Rurioctocog Alfa Pegol in Athn 2: A Longitudinal, Observational Study of Previously Treated Hemophilia Patients Switching Coagulation Replacement Factor Products

Janna M. Journeycake, MD, Michael Recht, MD PhD, Christine Guelcher, Hemostasis RN-BC, MS, PPCNP-BC, Ellis J. Neufeld, Margaret V. Ragni, MDMPH, Robert F. Sidonio, Jr., MDMSc, Cliff Takemoto, Michael D Tarantino, MD, Dunlei Cheng, PhD, Susan U. Lattimore, Jorge Caicedo, Michael Denne, PharmD
Journal: Blood
Blood (2020) 136 (Supplement 1): 17–18.
https://doi.org/10.1182/blood-2020-138898
Published: 2020
Journal Articles

Health-Related Quality of Life Outcomes for Patients with Transfusion-Dependent Beta-Thalassemia Treated with Luspatercept in the Believe Trial

Maria Domenica Cappellini, Ali T. Taher, Antonio Piga, MD, Farrukh Shah, Ersi Voskaridou, Vip Viprakasit, John B. Porter, MA, MD, FRCP, FRCPath, Olivier Hermine, Ellis J. Neufeld, Alexis A. Thompson, MD, Derek Tang, Peiwen Yu, Shien Guo, Jeevan K. Shetty, Dimana Miteva, Tatiana Zinger, Jay T. Backstrom, Esther Natalie Oliva, MD
Journal: Blood
Blood (2020) 136 (Supplement 1): 8–9.
https://doi.org/10.1182/blood-2020-136312
Published: 2020
Journal Articles

Inhibitor Development with Simoctocog Alfa in Previously Untreated Patients with Severe Haemophilia a: Final Results of the Nuprotect Study

Ri Liesner, Ellis J. Neufeld, MD
Journal: Blood
Blood (2019) 134 (Supplement_1): 903.
https://doi.org/10.1182/blood-2019-125520
Published: 2019
Journal Articles

Comorbidities and Complications in Adults with Pyruvate Kinase Deficiency

Audra N. Boscoe, PhD, Yan Yan, MS, Elizabeth Hedgeman, PhD, Eduard J. van Beers, MD PhD, Hanny Al-Samkari, MD, Wilma Barcellini, MD, Stefan W. Eber, MD, Bertil Glader, MD PhD, Hassan M. Yaish, MD, Satheesh Chonat, MD, Jennifer A. Rothman, MD, Mukta Sharma, MD MPH, Nina Kollmar, MD, Christine M. Knoll, MD, Kevin H. M. Kuo, MDMSc,FRCPC, Janet L. Kwiatkowski, MD MSCE, Yves D. Pastore, MD, Alexis A Thompson, MD MPH, Yaddanapudi Ravindranath, MBBS, Ellis J. Neufeld, MD, Heng Wang, MD PhD, Susanne Holzhauer, MD MSc, Vicky R. Breakey, BSc,MDFRCPC, Madeleine M. Verhovsek, MD FRCPC, Joachim B. Kunz, MD, Sujit Sheth, MD, Melissa A. McNaull, MD, Melissa J. Rose, DO, Dagmar Pospisilova, MD PhD, Jenny M. Despotovic, DO, Rachael F. Grace, MD
Journal: Blood
Blood (2019) 134 (Supplement_1): 2175.
https://doi.org/10.1182/blood-2019-123069
Published: 2019
Journal Articles

Lack of Inhibitor Development in the American Thrombosis and Hemostasis Network (ATHN)-2 Factor Switching Study: Preliminary Report of Primary Outcome

Robert F. Sidonio, Jr., MD MSc, Dunlei Cheng, PhD, Christine Guelcher, PPCNP-BC, Janna M. Journeycake, MD, Susan U Lattimore, Clifford Takemoto, MD, Michael D. Tarantino, MD, Crystal Watson, Ellis J. Neufeld, MD, Carol Fedor, RN
Journal: Blood
Blood (2019) 134 (Supplement_1): 1114.
https://doi.org/10.1182/blood-2019-128612
Published: 2019
Journal Articles

A Phase 3 Study of Eltrombopag Vs. Standard First-Line Management for Newly Diagnosed Immune Thrombocytopenia in Children

Kristin A. Shimano, MD, Rachael F. Grace, MD, Carolyn M. Bennett, MDMSc, Robert J Klaassen, MD FRCPC, Cindy Neunert, MD, Ellis J. Neufeld, MD, Clement Ma, PhD, Wendy B. London, PhD, Jenny M. Despotovic, DO, MS
Journal: Blood
Blood (2019) 134 (Supplement_1): 2369.
https://doi.org/10.1182/blood-2019-125487
Published: 2019
Journal Articles

The Believe Trial: Results of a Phase 3, Randomized, Double-Blind, Placebo-Controlled Study of Luspatercept in Adult Beta-Thalassemia Patients Who Require Regular Red Blood Cell (RBC) Transfusions

Maria Domenica Cappellini, MD, Vip Viprakasit, MD DPhil, Ali Taher, MDPhD, Pencho Georgiev, MD, Kevin H. M. Kuo, MDMSc,FRCPC, Thomas D. Coates, MD, Ersi Voskaridou, MD, Hong Keng Liew, Idit Pazgal-Kobrowski, Gianluca Forni, Silverio Perrotta, Abderrahim Khelif, Ashutosh Lal, MD, Antonis Kattamis, Efthymia Vlachaki, Raffaella Origa, MD, Yesim Aydinok, Mohamed Bejaoui, P. Joy Ho, Lee Ping Chew, Ping Chong Bee, Soo Min Lim, Meng-Yao Lu, Adisak Tantiworawit, Penka Ganeva, Liana Gercheva, Farrukh Shah, Ellis J. Neufeld, Abderrahmane Laadem, MD, Jeevan K. Shetty, Jun Zou, MDPhD, Dimana Miteva, PhD, Tatiana Zinger, PhD, Peter G. Linde, Matthew L. Sherman, Olivier Hermine, MDPhD, John Porter, MA MDFRCP FRCPath, Antonio Piga
Journal: Blood
Blood (2018) 132 (Supplement 1): 163.
https://doi.org/10.1182/blood-2018-163
Published: 2018
Journal Articles

Clinical spectrum of pyruvate kinase deficiency: data from the Pyruvate Kinase Deficiency Natural History Study

Clinical Trials & Observations
Rachael F. Grace, Paola Bianchi, Eduard J. van Beers, Stefan W. Eber, Bertil Glader, Hassan M. Yaish, Jenny M. Despotovic, Jennifer A. Rothman, Mukta Sharma, Melissa M. McNaull, Elisa Fermo, Kimberly Lezon-Geyda, D. Holmes Morton, Ellis J. Neufeld, Satheesh Chonat, Nina Kollmar, Christine M. Knoll, Kevin Kuo, Janet L. Kwiatkowski, Dagmar Pospíšilová, Yves D. Pastore, Alexis A. Thompson, Peter E. Newburger, Yaddanapudi Ravindranath, Winfred C. Wang, Marcin W. Wlodarski, Heng Wang, Susanne Holzhauer, Vicky R. Breakey, Joachim Kunz, Sujit Sheth, Melissa J. Rose, Heather A. Bradeen, Nolan Neu, Dongjing Guo, Hasan Al-Sayegh, Wendy B. London, Patrick G. Gallagher, Alberto Zanella, Wilma Barcellini
Journal: Blood
Blood (2018) 131 (20): 2183–2192.
https://doi.org/10.1182/blood-2017-10-810796
Published: 2018
Includes: Supplemental data
Journal Articles

Practical Application of the Athndataset: Evaluating Uptake of Extended Half-Life Factor Concentrates in Patients with Moderate and Severe Hemophilia

Stacy E. Croteau, MD, Dunlei Cheng, PhD, Alice J. Cohen, MD, Chris E. Holmes, MD PhD, Peter A. Kouides, MD, Leslie J Raffini, MD MSCE, Michael Silvey, DO, Courtney Thornburg, MD, Allison P. Wheeler, MD, Ellis J Neufeld, MD PhD
Journal: Blood
Blood (2017) 130 (Supplement 1): 23.
https://doi.org/10.1182/blood.V130.Suppl_1.23.23
Published: 2017
Journal Articles

Health Related Quality of Life and Fatigue Improve on Second Line Treatments in Pediatric Immune Thrombocytopenia (ITP)

Rachael F. Grace, MD, Robert J Klaassen, MD FRCPC, Rukhmi Bhat, MDMS, Michelle Neier, MD, Melissa J. Rose, DO, Jenny M. Despotovic, DO, MS, Carolyn M. Bennett, MD MSc, James B. Bussel, MD, Jennifer A. Rothman, MD, Vicky R. Breakey, BSc,MDFRCPC, Kerry Hege, MD, Kristin A. Shimano, MD, Kristina M. Haley, DO, Amy E. Geddis, MD, George R. Buchanan, MD, Adonis Lorenzano, MD, Cindy Neunert, MD, Michael R. Jeng, MD, Yves D. Pastore, MD, Shelley Crary, MD MS, Ellis J Neufeld, MD PhD, Nolan Neu, BS, Peter Forbes, BS, Michele P. Lambert, MD
Journal: Blood
Blood (2017) 130 (Supplement 1): 752.
https://doi.org/10.1182/blood.V130.Suppl_1.752.752
Published: 2017
Journal Articles

Comparison of Bleeding Tools in a Cohort of Pediatric Patients with ITP: Data from the Pediatric ITP Consortium of North America ICON1 Study

Breakey R. Vicky, MD MD FRCPC, Rachael F Grace, MD, Carolyn M. Bennett, Jenny M. Despotovic, DO, MS, Jennifer A Rothman, MD, Yves D. Pastore, MD, Ellis J Neufeld, MD PhD, Robert J. Klaassen, MD, Michele Lambert, MD, James B. Bussel, MD, George R. Buchanan, MD, Melissa J. Rose, DO, Amy E. Geddis, MD PhD, Kristin Shimano, MD, Kerry Hege, MD, Kristina M. Haley, DO, Adonis Lorenzana, MD, Alexis A. Thompson, MD MPH, Michael Jeng, MD, Shelley E. Crary, MD MSCS, Michelle Neier, MD, Travis Brown, Peter Forbes, BS, Cindy Neunert, MD
Journal: Blood
Blood (2016) 128 (22): 4752.
https://doi.org/10.1182/blood.V128.22.4752.4752
Published: 2016
Journal Articles

Clinical Characteristics and Quality of Life of Children with ITP Starting Second Line Treatments: Data from the ITP Consortium of North America ICON1 Study

Rachael F Grace, MD, Robert J. Klaassen, MD, Jennifer A Rothman, MD, Kerry Hege, MD, Ellis J Neufeld, MD PhD, Carolyn M. Bennett, Michele Lambert, MD, Vicky R. Breakey, BSc, MD MD FRCPC, James B. Bussel, MD, George R. Buchanan, MD, Melissa J. Rose, DO, Amy Geddis, MD PhD, Kristin Shimano, MD, Kristina M. Haley, DO, Adonis Lorenzana, MD, Cindy Neunert, MD, Alexis A. Thompson, MD MPH, Yves D. Pastore, MD, Michael Jeng, MD, Shelley E. Crary, MD MSCS, Michelle Neier, MD, Travis Brown, Peter Forbes, BS, Jenny M. Despotovic, DO, MS
Journal: Blood
Blood (2016) 128 (22): 249.
https://doi.org/10.1182/blood.V128.22.249.249
Published: 2016
Journal Articles

Physician Factors Determining Treatment Decisions in Selecting Second Line Agents for Pediatric ITP

Michele P. Lambert, MD MTR, Rachael F Grace, MD, Cindy Neunert, MD, Jenny M. Despotovic, DO, MS, Rukhmi Bhat, MDMS, Yves D. Pastore, MD, George R. Buchanan, MD, Robert J. Klaassen, MD, Carolyn M. Bennett, Jennifer A Rothman, MD, Vicky R. Breakey, BSc, MD MD FRCPC, James B. Bussel, MD, Melissa J. Rose, DO, Amy Geddis, MD PhD, Kristin Shimano, MD, Kerry Hege, MD, Kristina M. Haley, DO, Adonis Lorenzana, MD, Michael Jeng, MD, Shelley E. Crary, MD MSCS, Michelle Neier, MD, Travis Brown, Peter Forbes, BS, Ellis J Neufeld, MD PhD
Journal: Blood
Blood (2016) 128 (22): 1008.
https://doi.org/10.1182/blood.V128.22.1008.1008
Published: 2016
Journal Articles

Iron Overload Is Highly Prevalent in All Disease Severity States in Pyruvate Kinase Deficiency (PKD)

Eduard J van Beers, MD PhD, Wilma Barcellini, Stefan W. Eber, MD, Janet L Kwiatkowski, MD, Jennifer A Rothman, MD, Ellis J Neufeld, MD PhD, Mukta Sharma, MD MPH, D Holmes Morton, MD, Bertil Glader, MD PhD, Nina Kollmar, MD, Hassan M. Yaish, Jenny M. Despotovic, DO, MS, Christine M. Knoll, MD, Yves D. Pastore, MD, Kevin Kuo, BSc, MD, Peter E. Newburger, MD, Marcin W Wlodarski, MD, Alexis A. Thompson, MD MPH, Yaddanapudi Ravindranath, Winfred C. Wang, MD, Heng Wang, MD, Joachim B. Kunz, MD, Vicky R. Breakey, BSc, MD MD FRCPC, Melissa J. Rose, DO, Melissa Rhodes, MD, Heather A Bradeen, MD, Sujit Sheth, MD, Dongjing Guo, MS, Wendy B. London, PhD, Rachael F. Grace, MD
Journal: Blood
Blood (2016) 128 (22): 2430.
https://doi.org/10.1182/blood.V128.22.2430.2430
Published: 2016
Journal Articles

Hemophilia Joint Health Score Poorly Predicts the Need for Musculoskeletal Referrals in Routine Clinical Practice

Kim Cattivelli, MD, Hasan Al-Sayegh, MBChB, MPH, Amanda Boyer, PT, DPT, PCS, Elizabeth Mirek, PT, DPT, PCS, Clement Ma, PhD, Ellis J Neufeld, MD PhD, Stacy E. Croteau, MD MMS
Journal: Blood
Blood (2016) 128 (22): 3784.
https://doi.org/10.1182/blood.V128.22.3784.3784
Published: 2016
Journal Articles

Patient Reported Outcomes to Assess Quality of Hemophilia Care in North India - Results of a Global Partnership

Akshat Jain, MD MPH, Sudhir Mehta, MD, Mrinal Joshi, MD, Kapil Garg, MD, Laxmi Kant Goyal, MD, Aric Parnes, MD, Hasan Al-Sayegh, MPH, Clement Ma, PhD, Ellis J. Neufeld, MD PhD
Journal: Blood
Blood (2016) 128 (22): 3587.
https://doi.org/10.1182/blood.V128.22.3587.3587
Published: 2016