A5005606790- Hemophilia Treatment and Research
- Platelet Disorders and Treatments
- Blood Coagulation and Thrombosis Mechanisms
- Immunodeficiency and Autoimmune Disorders
- Orthopaedic implants and arthroplasty
- Opioid Use Disorder Treatment
- Blood donation and transfusion practices
- Blood properties and coagulation
- Autoimmune and Inflammatory Disorders
- Healthcare innovation and challenges
- Myeloproliferative Neoplasms: Diagnosis and Treatment
- Adolescent and Pediatric Healthcare
- Hip disorders and treatments
- Chronic Myeloid Leukemia Treatments
- Coagulation, Bradykinin, Polyphosphates, and Angioedema
- Diabetes Treatment and Management
- Hemostasis and retained surgical items
American Thrombosis and Hemostasis Network
2022-2024
Fairview Health Services
2023
University of Minnesota Medical Center
2020-2022
University of Minnesota
2017-2019
Oregon Health & Science University
2015
Background Ultra-rare inherited bleeding disorders (BDs) present important challenges for generating a strong evidence foundation optimal diagnosis and management. Without disorder-appropriate treatment, affected individuals potentially face life-threatening bleeding, delayed diagnosis, suboptimal management of invasive procedures, psychosocial distress, pain, decreased quality-of-life.Research design methods The National Hemophilia Foundation (NHF) the American Thrombosis Hemostasis Network...
Abstract The psychosocial impact of hemophilia on work was recently investigated in the Hemophilia Experiences, Results and Opportunities ( HERO ) study. findings revealed that had an for adults with moderate/severe caregivers children hemophilia. did not specifically evaluate education adults/children mild/moderate or employment spouses/partners affected children. Bridging B into Solutions (B‐HERO‐S) study evaluated lives adult men/women mild‐severe boys/girls their spouses/partners. Many...
The Bridging Hemophilia B Experiences, Results and Opportunities Into Solutions (B-HERO-S) initiative was launched in an effort to address specific gaps the understanding of psychosocial impact mild-moderate-severe hemophilia B. original (HERO) qualitative study evaluated needs people with A or multiple countries; however, a majority participants had more common moderate-severe A. B-HERO-S designed collaboration community evaluate adults caregivers children B, including affected women girls...
Abstract The psychosocial impact of hemophilia on activities was recently investigated in the Hemophilia Experiences, Results and Opportunities ( HERO ) study (675 people with 561 caregivers children 10 countries). B may not be accurately reflected results, as ~75% respondents described issues affecting males A. To address needs this population, Bridging Into Solutions (B‐ ‐S) developed a pilot United States collaboration community. analysis reported here assessed engagement recreational...
Despite the high prevalence of overweight and obesity in United States, few studies have assessed impact on haemophilia-specific outcomes or experiences/perceptions healthcare providers (HCPs) treating haemophilia.The Awareness, Care Treatment In Obesity maNagement to inform Haemophilia Patient Empowerment (ACTION-TO-HOPE) study was designed identify HCP insights unique challenges patients with haemophilia obesity/overweight (PwHO) barriers chronic weight management.An online survey...
Abstract Introduction In an era of increased opioid awareness, data on exposure in haemophilia patients are lacking. Aim The objectives this study were to (a) provide a detailed description based written prescription data, (b) compare our findings national haemophilia‐specific and general population datasets (c) identify predictors patients. Methods Medical records 183 adult 135 paediatric from two treatment centres (HTC) reviewed over 42‐month period. Chronic acute recorded, results...
Glanzmann's thrombasthenia (GT) is a rare bleeding disorder caused by mutation in the αIIbβ3 integrin essential for optimal platelet function and hemostasis. The aim of this study was to identify burden GT on patients caregivers through better understanding management psychosocial impact disorder.Participants online survey were recruited using disease specialty recruiter from Comprehensive Health Education Services. Data collected January 31 March 12, 2019. questionnaire designed collect...
Purpose: Congenital factor VII (FVII) deficiency is a rare bleeding disorder of variable phenotype with predominantly mucocutaneous bleeding. The aim this study was to identify the burden FVII on patients and caregivers through better understanding management psychosocial impact disease. Materials Methods: A disease specialty recruiter from Comprehensive Health Education Services recruited participants for online survey, which conducted January 31 March 12, 2019. moderator-assisted...
Background: Coagulation factor X, human is a plasma-derived X concentrate indicated to treat and prevent bleeding in individuals with hereditary deficiency (HFXD). The ages of patients whom data was collected the initial registration trials post-marketing studies ranged from 0-58 years. To date, there have been no reports on treatment elderly (>65 years) (pdFX) concentrate. Aims: report experience pdFX prophylactic HFXD patient >65 Methods: Data 71-year-old female receiving pdFX. Results:...