Figure 1.
Figure 2.
Figure 3.
Figure 4.
Figure 5.
Figure 6.
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- | Both | Both |
| PROMIS neuropathic pain quality 5a | PROMIS-Neuro Pain Quality 5a | Both | Both |
| PROMIS pain intensity 3a | PROMIS-Pain | Both | Both |
| PROMIS pain interference 4a | PROMIS-Pain | 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 |