Browsing by Author "Twilt, Marinka"

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    CanVasc Consensus Recommendations for the Management of Antineutrophil Cytoplasm Antibody-associated Vasculitis: 2020 Update
    (The Journal of Rheumatology Publishing Co. Ltd., 2022-04) Mendel, Arielle; Ennis, Daniel; Go, Ellen; Bakowsky, Volodko; Baldwin, Corisande; Benseler, Susanne M.; Cabral, David A.; Carette, Simon; Clements-Baker, Marie; Clifford, Alison H.; Cohen Tervaert, Jan Willem; Cox, Gerard; Dehghan, Natasha; Dipchand, Christine; Dhindsa, Navjot; Famorca, Leilani; Fifi-Mah, Aurore; Garner, Stephanie; Girard, Louis-Philippe; Lessard, Clode; Liang, Patrick; Noone, Damien; Makhzoum, Jean-Paul; Milman, Nataliya; Pineau, Christian A.; Reich, Heather N.; Rhéaume, Maxime; Robinson, David B.; Rumsey, Dax G.; Towheed, Tanveer E.; Trudeau, Judith; Twilt, Marinka; Yacyshyn, Elaine; Yeung, Rae S. M.; Barra, Lillian B.; Khalidi, Nader; Pagnoux, Christian; Pediatrics, School of Medicine
    Objective In 2015, the Canadian Vasculitis Research Network (CanVasc) created recommendations for the management of antineutrophil cytoplasm antibody (ANCA)-associated vasculitides (AAV) in Canada. The current update aimed to revise existing recommendations and create additional recommendations, as needed, based on a review of new available evidence. Methods A needs assessment survey of CanVasc members informed questions for an updated systematic literature review (publications spanning May 2014-September 2019) using Medline, Embase, and Cochrane. New and revised recommendations were developed and categorized according to the level of evidence and strength of each recommendation. The CanVasc working group used a two-step modified Delphi procedure to reach >80% consensus on the inclusion, wording and grading of each new and revised recommendation. Results Eleven new and 16 revised recommendations were created, and 12 original (2015) recommendations were retained. New and revised recommendations are discussed in detail within this document. Five original recommendations were removed, of which 4 were incorporated into the explanatory text. The supplementary appendix for practical use was revised to reflect the updated recommendations. Conclusion The 2020 updated recommendations provide rheumatologists, nephrologists, and other specialists caring for patients with AAV in Canada with new management guidance, based on current evidence and consensus from Canadian experts.
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    Feasibility of Conducting Comparative Effectiveness Research and Validation of a Clinical Disease Activity Score for Chronic Nonbacterial Osteomyelitis
    (The Journal of Rheumatology, 2023) Wu, Eveline Y.; Oliver, Melissa; Scheck, Joshua; Lapidus, Sivia; Akca, Ummusen Kaya; Yasin, Shima; Stern, Sara M.; Insalaco, Antonella; Pardeo, Manuela; Simonini, Gabriele; Marrani, Edoardo; Wang, Xing; Huang, Bin; Kovalick, Leonard K.; Rosenwasser, Natalie; Casselman, Gabriel; Liau, Adriel; Shao, Yurong; Yang, Claire; Mosa, Doaa Mosad; Tucker, Lori; Girschick, Hermann; Laxer, Ronald M.; Akikusa, Jonathan D.; Hedrich, Christian; Onel, Karen; Dedeoglu, Fatma; Twilt, Marinka; Ferguson, Polly J.; Ozen, Seza; Zhao, Yongdong; Pediatrics, School of Medicine
    Objective: Prospective comparative effectiveness research (CER) in chronic nonbacterial osteomyelitis (CNO) is lacking. Our objectives were to (1) determine the use and safety of each consensus treatment plan (CTP) regimen for CNO, (2) assess the feasibility of using the Chronic Nonbacterial Osteomyelitis International Registry (CHOIR) data for CER, and (3) develop and validate a CNO clinical disease activity score (CDAS) using CHOIR. Methods: Consenting children or young adults with CNO were enrolled into CHOIR. Demographic, clinical, and imaging data were prospectively collected. The CNO CDAS was developed through a Delphi survey and nominal group technique. External validation surveys were administered to CHOIR participants. Results: One hundred forty (78.2%) CHOIR participants enrolled between August 2018 and September 2020 received at least 1 CTP regimen. Baseline characteristics from different CTP groups were well matched. Patient pain, patient global assessment, and clinical CNO lesion count were key variables included in the CNO CDAS. The CDAS showed a strong correlation with patient/parent report of difficulty using a limb, back, or jaw and patient/parent report of disease severity, but a weak correlation with patient/parent report of fatigue, sadness, and worry. The change in CDAS was significant in patients reporting disease worsening or improvement (P < 0.001). The CDAS significantly decreased after initiating second-line treatments from median 12.0 (IQR 8.0-15.5) to 5.0 (IQR 3.0-12.0; P = 0.002). Although second-line treatments were well tolerated, psoriasis was the most common adverse event. Conclusion: The CNO CDAS was developed and validated for disease monitoring and assessment of treatment effectiveness. CHOIR provided a comprehensive framework for future CER.