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

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

Year: 2021
Grants:
N/A
Author(s):
Maria E Santaella, Michelle L Witkop, Cynthia Nichols, Rosaura Vidal, Leonard A. Valentino; Bleeding Disorder Data Registry Reveals Racial/Ethnic Disparities That Could Significantly Impact Patient Journey. Blood 2021; 138 (Supplement 1): 5004. doi: https://doi.org/10.1182/blood-2021-148025
National Hemophilia Foundation Convenes Diverse Community Voices to Define an Actionable National Research Blueprint for Inherited Bleeding Disorders

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

Year: 2021
Grants:
N/A
Author(s):
Michelle L Witkop, Michael Recht, Donna DiMichele, Kevin Mills, Leonard A. Valentino, Maria E Santaella; National Hemophilia Foundation Convenes Diverse Community Voices to Define an Actionable National Research Blueprint for Inherited Bleeding Disorders. Blood 2021; 138 (Supplement 1): 4952. doi: https://doi.org/10.1182/blood-2021-149518
National Hemophilia Foundation Enlists Diverse Patient Voices to Inform a National Research Blueprint for Inherited Bleeding Disorders

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

Year: 2021
Grants:
N/A
Author(s):
Maria E Santaella, Michelle L Witkop, Kevin Mills, Michael Recht, Donna DiMichele, Leonard A. Valentino; National Hemophilia Foundation Enlists Diverse Patient Voices to Inform a National Research Blueprint for Inherited Bleeding Disorders. Blood 2021; 138 (Supplement 1): 1904. doi: https://doi.org/10.1182/blood-2021-147857
Telegenetic Counseling for Females MLOF Participants

Telegenetic Counseling for Females MLOF Participants

Year: 2021
Grants:
N/A
Author(s):
Maria E. Santaella, RN-BC, MSN, CPHON®; Timothy V. Brent, MBA; Michelle Rice; Cindy Nichols, PhD; Michelle Witkop, DNP, FNP-BC
Poor outcomes in people with hemophilia: Physician and subject matter expert perspectives

Poor outcomes in people with hemophilia: Physician and subject matter expert perspectives

Year: 2021
Grants:
N/A
Author(s):
Jarren Santos, Martin Chandler , Christine Gerber, Moses Miles, Maria Santaella, Michelle Witjop, Michael Recht
Integrated Hemophilia Patient Care via a National Network of Care Centers in the United States: A Model for Rare Coagulation Disorders

Integrated Hemophilia Patient Care via a National Network of Care Centers in the United States: A Model for Rare Coagulation Disorders

Year: 2021
Grants:
N/A
Collaboration/Team Models
Author(s):
Leonard A Valentino, Judith R Baker, Regina Butler, Miguel Escobar, Neil Frick, Susan Karp, Kollet Koulianos, Susan Lattimore, Diane Nugent, Joseph N Pugliese, Michael Recht, Mark T Reding, Michelle Rice, Constance B Thibodeaux, Mark Skinner

Rare, chronic diseases such as hemophilia and other congenital coagulation disorders require coordinated delivery of services for optimal outcomes.  Hemophilia Treatment Centers (HTCs) are specialized, multidisciplinary healthcare centers providing team-based care to meet the physical, psychosocial, and emotional needs of people with hemophilia (PWH) and may serve as a model for other rare coagulation disorders. Health-care purchasers, as well as the general medical community, may not appreciate the breadth and quality of services provided by HTCs. They exemplify the acculturalization and actualization of integrated care by providing comprehensive diagnostic and treatment services that reduce morbidity, mortality, avoidable emergency room visits, hospitalizations, and overall costs while promoting a longer lifespan and improved patient functioning and outcomes.

This is accomplished by a  team-based approach relying upon a shared decision-making model to effectively prevent complications and manage symptoms in PWH, who are dependent on high-cost treatments. This article provides a concise yet comprehensive description of the core components of an HTC and the regional and national networks in the United States, which together achieve their incomparable value for all stakeholders.

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Preferences of people with hemophilia A and B for treatments including gene therapies in the US: A discrete choice experiment

Preferences of people with hemophilia A and B for treatments including gene therapies in the US: A discrete choice experiment

Year: 2021
Grants:
N/A
Author(s):
Witkop M, Morgan G, O’Hara J, et al. Patient preferences and priorities for haemophilia gene therapy in the US: a discrete choice experiment. Haemophilia. 2021;1-14. https://doi.org/10.1111/hae.14383
The Relationship Between Self-Reported Physical Activity, Treatment Regimen, Mental Health and Pain In Persons with Hemophilia

The Relationship Between Self-Reported Physical Activity, Treatment Regimen, Mental Health and Pain In Persons with Hemophilia

Year: 2021
Grants:
N/A
Author(s):
Michelle Witkop; Maria Santaella; Rosaura Vidal; Cynthia Nichols.

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The relationship between self-reported physical activity, treatment regimen, mental health and pain in persons with hemophilia enrolled in NHF's community voices in research.(2021). ABSTRACTS. Haemophilia, 27: 3-20. https://doi.org/10.1111/hae.14385

Community Voices in Research (CVR): A Patient-Centric Approach Moving the Future of Inherited Bleeding Disorders Forward

Community Voices in Research (CVR): A Patient-Centric Approach Moving the Future of Inherited Bleeding Disorders Forward

Year: 2021
Grants:
N/A
Author(s):
Rosaura P. Vidal, MPH; Maria E. Santaella, RN-BC, MSN, CPHON®; Michelle Witkop, DNP, FNP-BC

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(2021), Abstract. Res Pract Thromb Haemost, 5: e12554. https://doi.org/10.1002/rth2.12554

Passive Infusion Logging System (PILS): A Pilot

Passive Infusion Logging System (PILS): A Pilot

Year: 2021
Grants:
N/A
Author(s):
Maria E. Santaella, RN-BC, MSN, CPHON®; Timothy V. Brent, MBA; Michelle Rice; Cindy Nichols, PhD; Michelle Witkop, DNP, FNP-BC
Empowering Nurse Practitioners to Shorten Time to Diagnosis of von Willebrand Disease

Empowering Nurse Practitioners to Shorten Time to Diagnosis of von Willebrand Disease

Year: 2020
Grants:
N/A
Collaboration/Team Models
Author(s):
Michelle L. Witkop, DNP, FNP-BC & Maria E. Santaella, RN-BC, MSN, CPHON

Von Willebrand disease (VWD) is the most common inherited bleeding disorder known in humans, but there are numerous barriers to accurate and timely diagnosis. In January 2021, new evidence-based guidelines were released by the American Society of Hematology (ASH), the International Society on Thrombosis and Haemostasis (ISTH), the National Hemophilia Foundation (NHF), and the World Federation of Hemophilia (WFH) (James et al., 2021). The guidelines were designed to support patients, clinicians, and other health care professionals in promptly, accurately, and efficiently diagnosing VWD. Key recommendations in the guidelines include the use of bleeding-assessment tools when unusual bleeding is present and/or VWD is suspected; diagnostic assays; and the role of genetic vs. phenotypic testing for some types of VWD. Nurse practitioners can aid in identifying potential symptoms of VWD to help shorten the time from onset of symptoms to diagnosis.
 

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NHF Builds a Community-Driven National Research Blueprint for Inherited Bleeding Disorders

NHF Builds a Community-Driven National Research Blueprint for Inherited Bleeding Disorders

Year: 2020
Grants:
N/A
Collaboration/Team Models
Author(s):
Michelle Witkop, DNP, National Hemophilia Foundation; Michael Recht, MD, PhD, American Thrombosis and Hemostasis Network;
Donna DiMichele, MD, Consulting, LLC; Leonard Valentino, MD, National Hemophilia Foundation
  • The inherited bleeding disorders (IBD) community has witnessed significant advances in recent years thanks to novel therapeutic advances and technologies and improved diagnostic proficiency.
  • Yet important gaps persistent, particularly for those with rare disorders and underserved populations, including women with IBD.
  • A new initiative led by the National Hemophilia Foundation (NHF) and shaped by the voices of the patient community is underway to address this gap.
  • Our goal: to design and implement a national research blueprint that outlines actionable strategies to address the most important needs within the community and opportunities to accelerate progress through coordinated collaboration.
     

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Developing My Bleeding Disorders Community (MyBDC): A community-powered registry to provide a 360-view of living with a bleeding disorder

Developing My Bleeding Disorders Community (MyBDC): A community-powered registry to provide a 360-view of living with a bleeding disorder

Year: 2020
Grants:
N/A
Collaboration/Team Models
Author(s):
Michelle L. Witkop; Maria E. Santaella

Knowing the importance of including the consumers voice in the future of research, the National Hemophilia Foundation (NHF) partnered with the software healthcare analytics company; ArborMetrix, to develop a cloud-based platform; NHF’s Community Voices in Research (CVR), formerly known as MyBDC.

Through CVR, NHF will be able to send out longitudinal surveys and follow participants for a minimum of 5 years.
 

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The relationship between self-reported physical activity, treatment regimen, mental health and pain in persons with hemophilia enrolled in Community Voices in Research

The relationship between self-reported physical activity, treatment regimen, mental health and pain in persons with hemophilia enrolled in Community Voices in Research

Year: 2020
Grants:
N/A
Collaboration/Team Models
Author(s):
Michelle L. Witkop DNP; Maria Santaella, MSN, BC,; Cindy Nichols, PhD

The objective of this study is to assess the relationship between self-reported physical activity, treatment regimen, mental health, and pain in persons with hemophilia (PWH) enrolled in CVR.
 

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