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The National Hemophilia Foundation's State of the Science Research Summit: the foundation of a national research blueprint for inherited bleeding disorders

Expert review of hematology, 2023-03, Vol.16 (sup1), p.1-5

2023

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Predictors of quality of life among adolescents and young adults with a bleeding disorder

Health and quality of life outcomes, 2017-04, Vol.15 (1), p.67-67, Article 67

2017

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Soliciting international perspectives on an American national research agenda for inherited bleeding disorders

Expert review of hematology, 2023-03, Vol.16 (sup1), p.13-17

2023

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Building the blueprint: Formulating a community‐generated national plan for future research in inherited bleeding disorders

Haemophilia : the official journal of the World Federation of Hemophilia, 2022-09, Vol.28 (5), p.760-768

2022

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Big picture initiatives in bleeding disorders

Haemophilia : the official journal of the World Federation of Hemophilia, 2022-05, Vol.28 (S4), p.53-60

2022

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The National Hemophilia Foundation State of the Science Research Summit initiative: executive summary

Expert review of hematology, 2023-03, Vol.16 (sup1), p.129-134

2023

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Patient advocacy and its importance to laboratory medicine practice: A response from patient advocacy groups

International journal of laboratory hematology, 2020-06, Vol.42 (S1), p.23-24

2020

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Interrelationship between depression, anxiety, pain, and treatment adherence in hemophilia: results from a US cross-sectional survey

Patient preference and adherence, 2019-09, Vol.13, p.1577-1587, Article 1577

2019

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Cross-cultural assessment of the influence of the COVID-19 pandemic on the perceived mental health and medical experiences of persons with inherited bleeding disorders and their parents/guardians

Expert review of hematology, 2023-12, Vol.16 (12), p.1107-1123

2023

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Patient, caregiver, and provider perceptions of pain and pain management in adolescents and young adults with bleeding disorders

Haemophilia : the official journal of the World Federation of Hemophilia, 2017-11, Vol.23 (6), p.852-860

2017

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Racial Differences in Chronic Pain and Quality of Life among Adolescents and Young Adults with Moderate or Severe Hemophilia

Journal of racial and ethnic health disparities, 2016-03, Vol.3 (1), p.11-20

2016

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

Blood, 2021-11, Vol.138 (Supplement 1), p.5004-5004

2021

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

Blood, 2021-11, Vol.138 (Supplement 1), p.4952-4952

2021

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

Blood, 2021-11, Vol.138 (Supplement 1), p.1904-1904

2021

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US haemophilia centre nurses and advanced practice providers: Demographics, roles/responsibilities, training, educational barriers and employment benefits

Journal of Haemophilia Practice, 2018-03, Vol.4 (1), p.14-21

2018

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Impact of haemophilia on patients with mild‐to‐moderate disease: Results from the P‐FiQ and B‐HERO‐S studies

Haemophilia : the official journal of the World Federation of Hemophilia, 2021-01, Vol.27 (S1), p.8-16

2021

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Pain attitudes and pain outcomes among people with bleeding disorders: Results from community voices in research

Haemophilia : the official journal of the World Federation of Hemophilia, 2024-05, Vol.30 (3), p.720-727

2024

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Associations of quality of life, pain, and self-reported arthritis with age, employment, bleed rate, and utilization of hemophilia treatment center and health care provider services: results in adults with hemophilia in the HERO study

Patient preference and adherence, 2015-01, Vol.9 (default), p.1549-1560

2015

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Treatment outcomes, quality of life, and impact of hemophilia on young adults (aged 18–30 years) with hemophilia

American journal of hematology, 2015-12, Vol.90 (S2), p.S3-S10

2015

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Assessments of pain, functional impairment, anxiety, and depression in US adults with hemophilia across patient‐reported outcome instruments in the Pain, Functional Impairment, and Quality of Life (P‐FiQ) study

European journal of haematology, 2018-04, Vol.100 (S1), p.5-13

2018

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Identified unmet needs and proposed solutions in mild‐to‐moderate haemophilia: A summary of opinions from a roundtable of haemophilia experts

Haemophilia : the official journal of the World Federation of Hemophilia, 2021-01, Vol.27 (S1), p.25-32

2021

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Quality of life in a large multinational haemophilia B cohort (The B‐Natural study) – Unmet needs remain

Haemophilia : the official journal of the World Federation of Hemophilia, 2022-05, Vol.28 (3), p.453-461

2022

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Awareness, Care and Treatment In Obesity maNagement to inform Haemophilia Obesity Patient Empowerment (ACTION‐TO‐HOPE): Results of a survey of US haemophilia treatment centre professionals

Haemophilia : the official journal of the World Federation of Hemophilia, 2020-01, Vol.26 (S1), p.20-30

2020

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Management of US men, women, and children with hemophilia and methods and demographics of the Bridging Hemophilia B Experiences, Results and Opportunities into Solutions (B‐HERO‐S) study

European journal of haematology, 2017-04, Vol.98 (S86), p.5-17

2017

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Impact of hemophilia B on quality of life in affected men, women, and caregivers—Assessment of patient‐reported outcomes in the B‐HERO‐S study

European journal of haematology, 2018-06, Vol.100 (6), p.592-602

2018

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The National Hemophilia Foundation's State of the Science Research Summit: the foundation of a national research blueprint for inherited bleeding disorders

Predictors of quality of life among adolescents and young adults with a bleeding disorder

Soliciting international perspectives on an American national research agenda for inherited bleeding disorders

Building the blueprint: Formulating a community‐generated national plan for future research in inherited bleeding disorders

Big picture initiatives in bleeding disorders

The National Hemophilia Foundation State of the Science Research Summit initiative: executive summary

Patient advocacy and its importance to laboratory medicine practice: A response from patient advocacy groups

Interrelationship between depression, anxiety, pain, and treatment adherence in hemophilia: results from a US cross-sectional survey

Cross-cultural assessment of the influence of the COVID-19 pandemic on the perceived mental health and medical experiences of persons with inherited bleeding disorders and their parents/guardians

Patient, caregiver, and provider perceptions of pain and pain management in adolescents and young adults with bleeding disorders

Racial Differences in Chronic Pain and Quality of Life among Adolescents and Young Adults with Moderate or Severe Hemophilia

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

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

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

US haemophilia centre nurses and advanced practice providers: Demographics, roles/responsibilities, training, educational barriers and employment benefits

Impact of haemophilia on patients with mild‐to‐moderate disease: Results from the P‐FiQ and B‐HERO‐S studies

Pain attitudes and pain outcomes among people with bleeding disorders: Results from community voices in research

Associations of quality of life, pain, and self-reported arthritis with age, employment, bleed rate, and utilization of hemophilia treatment center and health care provider services: results in adults with hemophilia in the HERO study

Treatment outcomes, quality of life, and impact of hemophilia on young adults (aged 18–30 years) with hemophilia

Assessments of pain, functional impairment, anxiety, and depression in US adults with hemophilia across patient‐reported outcome instruments in the Pain, Functional Impairment, and Quality of Life (P‐FiQ) study

Identified unmet needs and proposed solutions in mild‐to‐moderate haemophilia: A summary of opinions from a roundtable of haemophilia experts

Quality of life in a large multinational haemophilia B cohort (The B‐Natural study) – Unmet needs remain

Awareness, Care and Treatment In Obesity maNagement to inform Haemophilia Obesity Patient Empowerment (ACTION‐TO‐HOPE): Results of a survey of US haemophilia treatment centre professionals

Management of US men, women, and children with hemophilia and methods and demographics of the Bridging Hemophilia B Experiences, Results and Opportunities into Solutions (B‐HERO‐S) study

Impact of hemophilia B on quality of life in affected men, women, and caregivers—Assessment of patient‐reported outcomes in the B‐HERO‐S study

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