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Clinical research for rare disease: opportunities, challenges, and solutions.
Griggs RC, Batshaw M, Dunkle M, Gopal-Srivastava R, Kaye E, Krischer J, Nguyen T, Paulus K, Merkel PA; Rare Diseases Clinical Research Network. Griggs RC, et al. Among authors: merkel pa. Mol Genet Metab. 2009 Jan;96(1):20-6. doi: 10.1016/j.ymgme.2008.10.003. Epub 2008 Nov 13. Mol Genet Metab. 2009. PMID: 19013090 Free PMC article.
An open-label trial of abatacept (CTLA4-IG) in non-severe relapsing granulomatosis with polyangiitis (Wegener's).
Langford CA, Monach PA, Specks U, Seo P, Cuthbertson D, McAlear CA, Ytterberg SR, Hoffman GS, Krischer JP, Merkel PA; Vasculitis Clinical Research Consortium. Langford CA, et al. Among authors: merkel pa. Ann Rheum Dis. 2014 Jul;73(7):1376-9. doi: 10.1136/annrheumdis-2013-204164. Epub 2013 Dec 9. Ann Rheum Dis. 2014. PMID: 24323392 Free PMC article.
Exploration, Development, and Validation of Patient-reported Outcomes in Antineutrophil Cytoplasmic Antibody-associated Vasculitis Using the OMERACT Process.
Robson JC, Milman N, Tomasson G, Dawson J, Cronholm PF, Kellom K, Shea J, Ashdown S, Boers M, Boonen A, Casey GC, Farrar JT, Gebhart D, Krischer J, Lanier G, McAlear CA, Peck J, Sreih AG, Tugwell PS, Luqmani RA, Merkel PA. Robson JC, et al. Among authors: merkel pa. J Rheumatol. 2015 Nov;42(11):2204-9. doi: 10.3899/jrheum.141143. Epub 2015 Sep 1. J Rheumatol. 2015. PMID: 26329344 Free PMC article. Review.
Experience With Direct-to-Patient Recruitment for Enrollment Into a Clinical Trial in a Rare Disease: A Web-Based Study.
Krischer J, Cronholm PF, Burroughs C, McAlear CA, Borchin R, Easley E, Davis T, Kullman J, Carette S, Khalidi N, Koening C, Langford CA, Monach P, Moreland L, Pagnoux C, Specks U, Sreih AG, Ytterberg S, Merkel PA; Vasculitis Clinical Research Consortium. Krischer J, et al. Among authors: merkel pa. J Med Internet Res. 2017 Feb 28;19(2):e50. doi: 10.2196/jmir.6798. J Med Internet Res. 2017. PMID: 28246067 Free PMC article. Clinical Trial.
Reply.
Langford CA, Krischer JP, Merkel PA; Vasculitis Clinical Research Consortium. Langford CA, et al. Among authors: merkel pa. Arthritis Rheumatol. 2017 Jul;69(7):1505-1506. doi: 10.1002/art.40107. Epub 2017 May 10. Arthritis Rheumatol. 2017. PMID: 28324914 No abstract available.
Metabolic pathways and immunometabolism in rare kidney diseases.
Grayson PC, Eddy S, Taroni JN, Lightfoot YL, Mariani L, Parikh H, Lindenmeyer MT, Ju W, Greene CS, Godfrey B, Cohen CD, Krischer J, Kretzler M, Merkel PA; Vasculitis Clinical Research Consortium, the European Renal cDNA Bank cohort, and the Nephrotic Syndrome Study Network. Grayson PC, et al. Among authors: merkel pa. Ann Rheum Dis. 2018 Aug;77(8):1226-1233. doi: 10.1136/annrheumdis-2017-212935. Epub 2018 May 3. Ann Rheum Dis. 2018. PMID: 29724730 Free PMC article.
Patient involvement in medical research: what patients and physicians learn from each other.
Young K, Kaminstein D, Olivos A, Burroughs C, Castillo-Lee C, Kullman J, McAlear C, Shaw DG, Sreih A, Casey G; Vasculitis Patient-Powered Research Network; Merkel PA. Young K, et al. Among authors: merkel pa. Orphanet J Rare Dis. 2019 Jan 24;14(1):21. doi: 10.1186/s13023-018-0969-1. Orphanet J Rare Dis. 2019. PMID: 30678705 Free PMC article.
A novel approach to conducting clinical trials in the community setting: utilizing patient-driven platforms and social media to drive web-based patient recruitment.
Applequist J, Burroughs C, Ramirez A Jr, Merkel PA, Rothenberg ME, Trapnell B, Desnick RJ, Sahin M, Krischer JP. Applequist J, et al. Among authors: merkel pa. BMC Med Res Methodol. 2020 Mar 13;20(1):58. doi: 10.1186/s12874-020-00926-y. BMC Med Res Methodol. 2020. PMID: 32169041 Free PMC article.
469 results