A study of implementation factors for a novel approach to clinical trials: constructs for consideration in the coordination of direct-to-patient online-based medical research

Autor: Peter F. Cronholm, Janelle Applequist, Jeffrey Krischer, Ebony Fontenot, Trocon Davis, Cristina Burroughs, Carol A. McAlear, Renée Borchin, Joyce Kullman, Simon Carette, Nader Khalidi, Curry Koening, Carol A. Langford, Paul Monach, Larry Moreland, Christian Pagnoux, Ulrich Specks, Antoine G. Sreih, Steven R. Ytterberg, Peter A. Merkel, Vasculitis Clinical Research Consortium

Publikováno v: BMC Medical Research Methodology, Vol 24, Iss 1, Pp 1-14 (2024)

Abstract Background Traditional medical research infrastructures relying on the Centers of Excellence (CoE) model (an infrastructure or shared facility providing high standards of research excellence and resources to advance scientific knowledge) are

Externí odkaz: https://doaj.org/article/25c1ad09be5c47348aa7b47e17b0f917

Effects of the COVID‐19 Pandemic on Patients Living With Vasculitis

Autor: Shubhasree Banerjee, Michael George, Kalen Young, Shilpa Venkatachalam, Jennifer Gordon, Cristina Burroughs, David Curtis, Marcela Ferrada, Kelly Gavigan, Peter C. Grayson, Joyce Kullman, Maria I. Danila, Jeffrey R. Curtis, Dianne G. Shaw, W. Benjamin Nowell, Peter A. Merkel, the Vasculitis Patient‐Powered Research Network

Publikováno v: ACR Open Rheumatology, Vol 3, Iss 1, Pp 17-24 (2021)

Objective This study aimed to analyze the concerns and health‐related behaviors in patients with vasculitis during the early phase of the coronavirus disease 2019 (COVID‐19) pandemic in North America. Methods Patients with vasculitis in North Ame

Externí odkaz: https://doaj.org/article/673b4b1082ab4575bbf150622c7addf3

Improving Care in Eosinophil-Associated Diseases: A Charter

Autor: David J. Jackson, Praveen Akuthota, Rebeca Andradas, Albert J. Bredenoord, Amanda Cordell, Sarah Gray, Joyce Kullman, Sameer K. Mathur, Ian Pavord, Florence Roufosse, Christian Rubio, Irena Clisson Rusek, Dagmar Simon, Mary Jo Strobel, Tonya Winders

Publikováno v: Advances in therapy, 39(6), 2323-2341. Health Communications Inc.
Jackson, David J; Akuthota, Praveen; Andradas, Rebeca; Bredenoord, Albert J; Cordell, Amanda; Gray, Sarah; Kullman, Joyce; Mathur, Sameer K; Pavord, Ian; Roufosse, Florence; Rubio, Christian; Rusek, Irena Clisson; Simon, Dagmar; Strobel, Mary Jo; Winders, Tonya (2022). Improving Care in Eosinophil-Associated Diseases: A Charter. Advances in therapy, 39(6), pp. 2323-2341. Springer 10.1007/s12325-022-02110-8

Eosinophil-associated diseases (EADs) are a range of heterogeneous conditions in which eosinophils are believed to play a critical pathological role. EADs include common illnesses such as eosinophilic asthma and chronic rhinosinusitis and rare condit

Externí odkaz: https://explore.openaire.eu/search/publication?articleId=doi_dedup___::e3025b7b37ca18f41f583ad05c6b9c14
https://pure.amc.nl/en/publications/improving-care-in-eosinophilassociated-diseases(8066bfb1-177c-431b-9da6-69002de399b5).html

Diagnostic Delays in Vasculitis and Factors Associated With Time to Diagnosis

Autor: Antoine Sr, Keri Cronin, Dianne Shaw, Kalen Young, Cristina Burroughs, Joyce Kullman, Kirthi Machireddy, Carol McAlear, Peter Merkel

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 to describe the diagnostic journey of patients with v

Externí odkaz: https://explore.openaire.eu/search/publication?articleId=doi_________::cb1c8524184b012333780e3355e6edaf
https://doi.org/10.21203/rs.3.rs-88022/v1

ANCA-associated vasculitis

Autor: Jennifer Gordon, Elisabeth Brouwer, Paul A. Lyons, Ulrich Specks, Joyce Kullman, Caroline O. S. Savage, David Jayne, A. Richard Kitching, Renate Kain, Neil Basu, Peter A. Merkel, Hans-Joachim Anders

Publikováno v: Nature Reviews. Disease Primers, 6(1):71. Nature Publishing Group
Nature Reviews Disease Primers

The anti-neutrophil cytoplasmic antibody (ANCA)-associated vasculitides (AAVs) are a group of disorders involving severe, systemic, small-vessel vasculitis and are characterized by the development of autoantibodies to the neutrophil proteins leukocyt

Externí odkaz: https://explore.openaire.eu/search/publication?articleId=doi_dedup___::f72c4ab4e153ef4da19204143c0af8fd
https://www.repository.cam.ac.uk/handle/1810/310259