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Community Voices in Research (CVR): A lived experience expert-centred approach to advance the future of inheritable bleeding disorders

Maria E Santaella

Maria E Santaella

National Bleeding Disorders Foundation (NBDF) – Research DepartmentNew York, United States
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Santaella, Maria E
, 
Cynthia D Nichols

Cynthia D Nichols

Munson Medical CenterTraverse City, United States
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Nichols, Cynthia D
 y 
Michelle Witkop

Michelle Witkop

Bleeding Disorders Consultant, Contributed to CVR development while employed at NBDFMichigan, United States
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Witkop, Michelle
  
11 feb 2025
Community Voices in Research (CVR): A lived experience expert-centred approach to advance the future of inheritable bleeding disorders's Cover Image
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Categoría del artículo: Clinical Research
Publicado en línea: 11 feb 2025
Páginas: 136 - 146
DOI: https://doi.org/10.2478/jhp-2024-0020
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© 2024 Maria E Santaella et al., published by Sciendo
This work is licensed under the Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.

Figure 1.

CVR development timeline
CVR development timeline

Figure 2.

CVR enrolment process
CVR enrolment process

Figure 3.

CVR data points
CVR data points

Figure 4.

CVR as a community tool
CVR as a community tool

Figure 5.

Cumulative enrolment in CVR since 2019
Cumulative enrolment in CVR since 2019

Figure 6.

The power of CVR
The power of CVR

Publications and abstract presentations using CVR data to date

YEAR TITLE PUBLICATION MEETING
2024 The relationship between different pain measures, depression, and social support and race and ethnicity in persons with hemophilia AJH THSNA
Glanzmann Thrombasthenia beyond bleeding: Insights from lived experience experts Haemophilia WFH
Pain attitudes and pain outcomes among people with bleeding disorders: Results from community voices in research [27] Haemophilia
2023 Gene Therapy for Hemophilia A: A Mixed methods study of patient preferences & decision-making [28] PPA
Development of a haemophilia A gene therapy shared decision making tool for clinicians [29] Haemophilia
Gene therapy preferences & informed decision-making: Results from NHF CVR survey [30] Haemophilia
2022 Relationship between perceived social support, mental health, activity, & chronic pain in PIBD [31] Blood ASH
2021 Community Voices in Research (CVR): A patient-centric approach moving the future of IBDs forward [32] RPTH HTRS
Community Voices in Research (CVR): A patient-centric approach to study design phase through Community Research Network DIA
Poor outcomes in people with hemophilia: Physician & subject matter expert perspectives ATHN
Bleeding disorder data registry reveals racial/ethnic disparities that could significantly impact patient journey [33] Blood ASH
Utilizing a community registry to analyze pain limitations in PIBDs ASPMN
The relationship between self-reported physical activity, treatment, regimen, mental health, & pain in persons with hemophilia [34] Haemophilia WFH-MSK
Patient preferences & priorities for haemophilia gene therapy in the US: A discrete choice experiment [35] Haemophilia
Evidence of a disability paradox in patient-reported outcomes in haemophilia [36] Haemophilia
Preferences of people with hemophilia A and B for treatments including gene therapy in the US: A discrete choice experiment [37] RPTH THSNA
2020 Developing My Bleeding Disorders Community (MyBDC): A community-powered registry to provide a 360-view of living with a bleeding disorder [38] Haemophilia

Validated tools included in CVR surveys

TOOL ABBREVIATION CVR VERSION FAMILY OR AFFECTED SURVEYS
Adult Sickle Cell Quality of Life Measurement Information System (Pain Impact) ASCQ-Me Pain Impact Both Both
Alcohol Use Disorders Identification Test-Concise AUDIT-C New Both
Area Deprivation Index ADI New Both
Brief Resilient Coping Scale BRCS New Both
Duke-UNC Functional Social Support Questionnaire FSSQ Both Both
EuroQual 5 dimensions of health-5 levels EQ-5D-5L New Both
Family Experience with Health Care Provider Questionnaire FHCPQ New Family only
International Physical Activity Questionnaire-Short form IPAQ-SF New Both
Pain questions from the 2016 National Health Interview Survey NHIS pain Both Both
Pain Self-Efficacy Questionnaire PSEQ New Both
PROMIS anxiety short form 7a PROMIS-Anxiety 7a Both Both
PROMIS depression short form 8b PROMIS-Depression 8b Both Both
PROMIS neuropathic pain quality 5a PROMIS-Neuro Pain Quality 5a Both Both
PROMIS pain intensity 3a PROMIS-PainIntensity 3a Both Both
PROMIS pain interference 4a PROMIS-PainInterference 4a Both Both
Protocol for Responding to and Assessing Patients’ Assets, Risks, and Experiences PRAPARE New Both
Ruta Menorrhagia Questionnaire RMQ New Both
Zarit Scale of Caregiver Burden (Zarit Burden Interview) ZBI New Family only
Idioma:
Inglés
Calendario de la edición:
1 veces al año
Temas de la revista:
Medicina, Ciencias médicas básicas, Ciencias médicas básicas, otros, Medicina Clínica, Medicina Clínica, otros, Farmacia, Farmacología
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