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Journal Articles

Walking the Walk: Inclusion of Lived Experience Experts in the Design of the National Hemophilia Foundation's National Research Blueprint for Those Living with Inherited Bleeding Disorders

Maria E. E Santaella, Samantha Carlson, LMSW, Donna DiMichele, Keri Norris, Sammie Valadez, Leonard A. Valentino, Esmeralda Vazquez, Michelle Witkop, Michael Recht

Blood (2023) 142 (Supplement 1): 7216.

https://doi.org/10.1182/blood-2023-186109

Published: 2023

Journal Articles

National Hemophilia Foundation Convenes Diverse Community Voices to Define an Actionable National Research Blueprint for Inherited Bleeding Disorders

Michelle L Witkop, Michael Recht, Donna DiMichele, Kevin Mills, Leonard A. Valentino, Maria E Santaella

Blood (2021) 138 (Supplement 1): 4952.

https://doi.org/10.1182/blood-2021-149518

Published: 2021

Journal Articles

Bleeding Disorder Data Registry Reveals Racial/Ethnic Disparities That Could Significantly Impact Patient Journey

Maria E Santaella, Michelle L Witkop, Cynthia Nichols, Rosaura Vidal, Leonard A. Valentino

Blood (2021) 138 (Supplement 1): 5004.

https://doi.org/10.1182/blood-2021-148025

Published: 2021

Journal Articles

National Hemophilia Foundation Enlists Diverse Patient Voices to Inform a National Research Blueprint for Inherited Bleeding Disorders

Maria E Santaella, Michelle L Witkop, Kevin Mills, Michael Recht, Donna DiMichele, Leonard A. Valentino

Blood (2021) 138 (Supplement 1): 1904.

https://doi.org/10.1182/blood-2021-147857

Published: 2021

Journal Articles

Results of Genetic Analysis of 11,341 Participants Enrolled in the My Life, Our Future (MLOF) Hemophilia Genotyping Initiative

Jill M Johnsen, MD, Shelley N Fletcher, Angela Dove, Haley McCracken, Beth K Martin, Martin Kircher, Neil C Josephson, MD, Jay Shendure, Sarah Ruuska, MPH, Leonard A. Valentino, MD, Glenn Pierce, MD PhD, Crystal Watson, BS, Dunlei Cheng, PhD, Michael Recht, MD PhD, Barbara A. Konkle, MD

Blood (2020) 136 (Supplement 1): 19.

https://doi.org/10.1182/blood-2020-140649

Published: 2020

Journal Articles

A Phase 1/2 Trial of Investigational Spk-8011 in Hemophilia a Demonstrates Durable Expression and Prevention of Bleeds

Blood (2018) 132 (Supplement 1): 487.

https://doi.org/10.1182/blood-2018-99-115495

Published: 2018

Journal Articles

The Safety of Hemophilia Product Use: a Simulation Analysis

Stephanie Chiuve, ScD, Daniel Gallo, PhD, Christopher Rowan, PhD, Leonard A. Valentino, MD

Blood (2016) 128 (22): 5914.

https://doi.org/10.1182/blood.V128.22.5914.5914

Published: 2016

Journal Articles

Assessing Protection from Intracranial Hemorrhage in Clinical Studies for Investigational Agents in Patients with Hemophilia

Daniel Gallo, PhD, Stephanie Chiuve, ScD, Christopher Rowan, PhD, Leonard A. Valentino, MD

Blood (2016) 128 (22): 5915.

https://doi.org/10.1182/blood.V128.22.5915.5915

Published: 2016

Journal Articles

Modelling FVIII Levels for Prediction of Zero Spontaneous-Joint Bleeding in a Cohort of Severe Hemophilia a Subjects with Target Joints Initiated on Tertiary Prophylaxis

Kathelijn Fischer, MD PhD MSc, Pratima Chowdary, FRCPath, MRCPath, MRCP, MD, Peter Collins, MD, Amy Cotterill, PhD, Barbara Konkle, MD, Victor S. Blanchette, FRCP, FRCPC, Steven W. Pipe, MD, Martin Wolfsegger, Cstat (RSS), Werner Engl, PhD Cstat, Jimena V Goldstine, PhD, Leonard A. Valentino, MD FAAP, Gerald Spotts, PhD

Blood (2016) 128 (22): 2576.

https://doi.org/10.1182/blood.V128.22.2576.2576

Published: 2016

Journal Articles

Increased Risk of Adverse Bone Health Outcomes in People with Bleeding Disorders

Jason Booth, MPH, Mei Lu, MS, Daniel Gallo, PhD, Diane Ito, MA, Leonard A. Valentino, MD FAAP

Blood (2016) 128 (22): 250.

https://doi.org/10.1182/blood.V128.22.250.250

Published: 2016

Journal Articles

Modeling Minimally-Effective FVIII Trough Levels in Hemophilia a Patients on PK-Guided Prophylaxis

Gerald Spotts, PhD, Steven W. Pipe, MD, Erik Berntorp, MD PhD, Peter W. Collins, MD, Victor S. Blanchette, MD FRCPC, Kathelijn Fischer, MD PhD MSC, MyungShin Oh, Leonard A. Valentino, MD FAAP

Blood (2014) 124 (21): 689.

https://doi.org/10.1182/blood.V124.21.689.689

Published: 2014

Journal Articles

Is Bleeding In Hemophilia Really Spontaneous Or Activity Related: Analysis Of US Patient/Caregiver Data From The Hemophilia Experiences, Results and Opportunities (HERO) Study

Leonard A. Valentino, MD, FAAP, Angela Forsyth, Michelle Witkop, DNP, FNP-BC, Christine Guelcher, Angela Lambing, David L. Cooper, MD, MBA

Blood (2013) 122 (21): 2364.

https://doi.org/10.1182/blood.V122.21.2364.2364

Published: 2013

Journal Articles

Biologic Response and Adverse Events To Stimate In Patients With Von Willebrand Disease

Xiangqian Song, MD. PhD., Leonard A. Valentino, MD, FAAP, Mindy L. Simpson, MD, FAAP, Lisa Boggio, MD

Blood (2013) 122 (21): 2365.

https://doi.org/10.1182/blood.V122.21.2365.2365

Published: 2013

Journal Articles

Association Of Bleeding Tendency With Time Under Target FIX Activity Levels In Severe Hemophilia B Patients Treated With Recombinant Factor IX Fc Fusion Protein

Amy Shapiro, MD, James Potts, Ph.D, MPH, Shuanglian Li, Ph.D., Leonard A. Valentino, MD, FAAP, Lei Diao, PhD, Ping Wang, Ph.D., Brian Robinson, M.D., Glenn F Pierce, MD, PhD, Haiyan Jiang, PhD

Blood (2013) 122 (21): 2349.

https://doi.org/10.1182/blood.V122.21.2349.2349

Published: 2013

Journal Articles

Pharmacokinetics, Safety, and Efficacy Of Long-Lasting Recombinant Factor IX Fc Fusion Protein (rFIXFc) In Adolescent Subjects With Hemophilia B: A Subgroup Analysis Of The B-LONG Study

Amy Shapiro, MD, John Pasi, MBChB, PhD, FRCP, FRCPath, Johnny Mahlangu, MD, David J. Perry, MD, PhD, FRCP, FRCPath, Jerry S Powell, MD, Margaret V. Ragni, MD, MPH, Leonard A. Valentino, MD, FAAP, Margareth Ozelo, MD, PhD, Karen Nugent, MSc, Shuanglian Li, MD, PhD, Aoife Brennan, MB, BCh, BAO, MMSC, Glenn F Pierce, MD, PhD, Geoffrey Allen, MD

Blood (2013) 122 (21): 2350.

https://doi.org/10.1182/blood.V122.21.2350.2350

Published: 2013

Journal Articles

Developing Infrastructure For International Collaborative Research In Coagulation Disorders: Coagulation Disorders Research Consortium (CDRC) and Coagulation Disorders Data and Specimen Repository (Biorepository)

Candace Enockson, MA, Yiyong Wu, MS, Narine Hakobyan, PhD, Mindy L. Simpson, MD, FAAP, Leonard A. Valentino, MD

Blood (2013) 122 (21): 4787.

https://doi.org/10.1182/blood.V122.21.4787.4787

Published: 2013

Journal Articles

Pharmacokinetics Of Recombinant Factor VIII Fc Fusion Protein (rFVIIIFc) in Pediatric Subjects With Hemophilia A: An Interim Analysis Of The Kids A-LONG Study

Guy Young, MD, Johnny Mahlangu, MD, Beatrice Nolan, MB, MRCPI, FRCPATH, Simon Brown, MD, FRACP, FRCPA, MBBS, FRCP, FRCPath, Leonard A. Valentino, MD, FAAP, Raina Liesner, MA, MBBChir, MD, FRCP, FRCPath, MRCPCH, Yingwen Dong, PhD, Lei Diao, PhD, Haiyan Jiang, PhD, Karen Nugent, MSc, Glenn F. Pierce, MD, PhD, Geoffrey Allen, MD

Blood (2013) 122 (21): 3609.

https://doi.org/10.1182/blood.V122.21.3609.3609

Published: 2013

Journal Articles

Vitamin D Deficiency and Osteoporosis In Hemophilia: An Underappreciated Risk

Mindy L. Simpson, MD, FAAP, Leonard A. Valentino, MD, FAAP

Blood (2013) 122 (21): 3593.

https://doi.org/10.1182/blood.V122.21.3593.3593

Published: 2013

Journal Articles

Long-Term Orthopedic Effects Of Delaying Prophylaxis In Severe Hemophilia A Until Age 6 Years: Results Of The Joint Outcome Study Continuation (JOSc)

Marilyn J. Manco-Johnson, MD, Michael L Manco-Johnson, MD, Taylor A Blades, BS, Sharon Funk, DPT, Heidi Lane, DPT, Kevin McRedmond, MD, Amy L. Dunn, MD, Michael Recht, MD, PhD, Amy D. Shapiro, MD, Leonard A. Valentino, MD, Deborah Brown

Blood (2013) 122 (21): 210.

https://doi.org/10.1182/blood.V122.21.210.210

Published: 2013

Journal Articles

Joint Disease and the Potential for Improved Joint Health in Inhibitor Patients Who Have a Good Response to aPCC Prophylaxis: Data From the Profeiba Study

Cindy A. Leissinger, MD, Alessandro Gringeri, MD, Leonard A. Valentino, MD, Paolo A Cortesi, MSc

Blood (2012) 120 (21): 3374.

https://doi.org/10.1182/blood.V120.21.3374.3374

Published: 2012

NARROW

Walking the Walk: Inclusion of Lived Experience Experts in the Design of the National Hemophilia Foundation's National Research Blueprint for Those Living with Inherited Bleeding Disorders

National Hemophilia Foundation Convenes Diverse Community Voices to Define an Actionable National Research Blueprint for Inherited Bleeding Disorders

Bleeding Disorder Data Registry Reveals Racial/Ethnic Disparities That Could Significantly Impact Patient Journey

National Hemophilia Foundation Enlists Diverse Patient Voices to Inform a National Research Blueprint for Inherited Bleeding Disorders

Results of Genetic Analysis of 11,341 Participants Enrolled in the My Life, Our Future (MLOF) Hemophilia Genotyping Initiative

A Phase 1/2 Trial of Investigational Spk-8011 in Hemophilia a Demonstrates Durable Expression and Prevention of Bleeds

The Safety of Hemophilia Product Use: a Simulation Analysis

Assessing Protection from Intracranial Hemorrhage in Clinical Studies for Investigational Agents in Patients with Hemophilia

Modelling FVIII Levels for Prediction of Zero Spontaneous-Joint Bleeding in a Cohort of Severe Hemophilia a Subjects with Target Joints Initiated on Tertiary Prophylaxis

Increased Risk of Adverse Bone Health Outcomes in People with Bleeding Disorders

Modeling Minimally-Effective FVIII Trough Levels in Hemophilia a Patients on PK-Guided Prophylaxis

Is Bleeding In Hemophilia Really Spontaneous Or Activity Related: Analysis Of US Patient/Caregiver Data From The Hemophilia Experiences, Results and Opportunities (HERO) Study

Biologic Response and Adverse Events To Stimate In Patients With Von Willebrand Disease

Association Of Bleeding Tendency With Time Under Target FIX Activity Levels In Severe Hemophilia B Patients Treated With Recombinant Factor IX Fc Fusion Protein

Pharmacokinetics, Safety, and Efficacy Of Long-Lasting Recombinant Factor IX Fc Fusion Protein (rFIXFc) In Adolescent Subjects With Hemophilia B: A Subgroup Analysis Of The B-LONG Study

Developing Infrastructure For International Collaborative Research In Coagulation Disorders: Coagulation Disorders Research Consortium (CDRC) and Coagulation Disorders Data and Specimen Repository (Biorepository)

Pharmacokinetics Of Recombinant Factor VIII Fc Fusion Protein (rFVIIIFc) in Pediatric Subjects With Hemophilia A: An Interim Analysis Of The Kids A-LONG Study

Vitamin D Deficiency and Osteoporosis In Hemophilia: An Underappreciated Risk

Long-Term Orthopedic Effects Of Delaying Prophylaxis In Severe Hemophilia A Until Age 6 Years: Results Of The Joint Outcome Study Continuation (JOSc)

Joint Disease and the Potential for Improved Joint Health in Inhibitor Patients Who Have a Good Response to aPCC Prophylaxis: Data From the Profeiba Study

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American Society of Hematology

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ASH Publications

American Society of Hematology

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