A5040208001- Vasculitis and related conditions
- Mental Health and Patient Involvement
- Eosinophilic Esophagitis
- Otitis Media and Relapsing Polychondritis
- Empathy and Medical Education
- Healthcare Systems and Technology
- Patient-Provider Communication in Healthcare
- Inflammasome and immune disorders
- Ethics in Clinical Research
- Eosinophilic Disorders and Syndromes
- Medical and Biological Sciences
- Neutrophil, Myeloperoxidase and Oxidative Mechanisms
- Autoimmune and Inflammatory Disorders Research
- Urticaria and Related Conditions
- Health Systems, Economic Evaluations, Quality of Life
- Pharmaceutical industry and healthcare
- Health Policy Implementation Science
- Clinical Reasoning and Diagnostic Skills
- Asthma and respiratory diseases
- Biomedical Ethics and Regulation
- Coagulation, Bradykinin, Polyphosphates, and Angioedema
Vasculitis Foundation
2017-2024
Abstract Background Patients with vasculitis, a set of rare diseases, encounter delays in obtaining an accurate diagnosis which can lead to substantial morbidity and increased mortality. This study sought describe the diagnostic journey patients vasculitis identify factors associated time diagnosis. Methods enrolled online registry completed two-stage study: Stage 1: survey open-ended questions about patients’ journeys perceived rapid or delayed diagnosis; 2: specific based on data from 1...
There is increasing interest in actively involving patients the process of medical research to help ensure relevant and important both researchers people affected by disease under study. This project examined recently formed Vasculitis Patient-Powered Research Network (VPPRN), a rare network, better understand what investigators learned from working on teams together. Qualitative interviews were conducted phone with patients, physician/PhD-investigators, study managers/staff who participated...
Background: The target sample size for clinical trials often necessitates a multicenter (center of excellence, CoE) approach with associated added complexity, cost, and regulatory requirements. Alternative recruitment strategies need to be tested against this standard model.
Objective This study aimed to analyze the concerns and health-related behaviors in patients with vasculitis during early phase of coronavirus disease 2019 (COVID-19) pandemic North America. Methods Patients America were invited complete an online survey through Vasculitis Patient-Powered Research Network collaboration Foundation Relapsing Polychondritis Foundation. Questions focused on related doctors' visits, tests, medication, telehealth use. Factors affecting their concern determined....
Eosinophil-associated diseases (EADs) are a range of heterogeneous conditions in which eosinophils believed to play critical pathological role. EADs include common illnesses such as eosinophilic asthma and chronic rhinosinusitis rare hypereosinophilic syndromes (HES) gastrointestinal disorders (EGIDs). associated with substantial burdens for the patient, including chronic, debilitating symptoms, increased financial burden, decreased health-related quality life, need repeated visits multiple...
There are limited data on the reproductive health of women with vasculitis. This study used a prospective, international vasculitis pregnancy registry to survey during and after pregnancy. The Vasculitis Pregnancy Registry (VPREG) is imbedded within Patient-Powered Research Network, an online research infrastructure. Any pregnant woman diagnosis can self-enroll. After enrollment, invited complete surveys at entry, once per trimester, postpartum. Descriptive statistics reported here. Between...
Objective This study explored the reproductive journeys of women with vasculitis, including their conversations healthcare providers, disease activity, medication changes, and delivery experiences. Methods Interviews were conducted registered in Vasculitis Pregnancy Registry (VPREG), an online patient-reported registry pregnant vasculitis. A team physicians, patients, qualitative researchers developed a interview guide. Participant responses evaluated using thematic analysis. Results...
Background: As treatments for vasculitis improve and become less ovarian-toxic, more young women with these diseases will pregnant.How best to manage pregnancies remains unclear and, given the rarity of pregnancies, challenging study.The Vasculitis Pregnancy Registry (VPreg) is an online, patient-driven prospective pregnancy registry that designed collect observational data increase our understanding in vasculitis.Methods: VPreg imbedded within Patient-Powered Research Network (VPPRN), where...
Abstract Background : Patients with vasculitis, a set of rare diseases, encounter delays in obtaining an accurate diagnosis which can lead to substantial morbidity and increased mortality. This study sought describe the diagnostic journey patients vasculitis identify factors associated time diagnosis. Methods: enrolled online registry completed two-stage study: Stage 1: Survey open-ended questions about patients’ journeys perceived rapid or delayed diagnosis; 2: specific based on data from 1...