Shannon van Hoorn

145 PROMIS in VWD, IPFDs and RBDs 5 REFERENCES 1. Palla R, Peyvandi F, Shapiro AD. Rare bleeding disorders: diagnosis and treatment. Blood. 2015;125(13):2052-61. doi:10.1182/blood-2014-08-532820 2. World Federation of Hemophilia. Report on the Annual Global Survey 2020. 2021. https://www1.wfh.org/publications/files/pdf-2045.pdf 3. Saes JL, Verhagen MJA, Meijer K, et al. Bleeding severity in patients with rare bleeding disorders: real-life data from the RBiN study. Blood Adv. 2020;4(20):50255034. doi:10.1182/bloodadvances.2020002740 4. Rodeghiero F, Pabinger I, Ragni M, et al. Fundamentals for a Systematic Approach to Mild and Moderate Inherited Bleeding Disorders: An EHA Consensus Report. Hemasphere. 2019;3(4):e286. doi:10.1097/HS9.0000000000000286 5. Leebeek FW, Eikenboom JC. Von Willebrand's Disease. N Engl J Med. 2016;375(21):2067-2080. doi:10.1056/NEJMra1601561 6. Acharya SS. Rare bleeding disorders in children: identification and primary care management. Pediatrics. 2013;132(5):882-92. doi:10.1542/peds.2012-3662 7. Sharathkumar AA, Pipe SW. Bleeding disorders. Pediatr Rev. 2008;29(4):121-29. doi:10.1542/pir.29-4-121 8. Hayward CP, Rao AK, Cattaneo M. Congenital platelet disorders: overview of their mechanisms, diagnostic evaluation and treatment. Haemophilia. 2006;12 Suppl 3(s3):128-36. doi:10.1111/j.1365-2516.2006.01270.x 9. Atiq F, Saes JL, Punt MC, et al. Major differences in clinical presentation, diagnosis and management of men and women with autosomal inherited bleeding disorders. E Clinical Medicine. 2021;32:100726. doi:10.1016/j.eclinm.2021.100726 10. de Wee EM, Sanders YV, Mauser-Bunschoten EP, et al. Determinants of bleeding phenotype in adult patients with moderate or severe von Willebrand disease. Thromb Haemost. 2012;108(4):683-92. doi:10.1160/TH12-04-0244 11. Boender J, Kruip MJ, Leebeek FW. A diagnostic approach to mild bleeding disorders. J Thromb Haemost. 2016;14(8):1507-16. doi:10.1111/jth.13368 12. Blaauwgeers MW, Kruip M, Beckers EAM, et al. Congenital platelet disorders and health status-related quality of life. Res Pract Thromb Haemost. 2020;4(1):100-105. doi:10.1002/rth2.12281 13. Jain S, Acharya SS. Management of rare coagulation disorders in 2018. Transfus Apher Sci. 2018;57(6):705-712. doi:10.1016/j.transci.2018.10.009 14. Saes JL, Schols SEM, van Heerde WL, Nijziel MR. Hemorrhagic disorders of fibrinolysis: a clinical review. J Thromb Haemost. 2018;16(8):1498-1509. doi:10.1111/ jth.14160 15. van Hoorn ES, Houwing ME, Al Arashi W, et al. Patient-reported outcomes in autosomal inherited bleeding disorders: A systematic literature review. Haemophilia. 2022;28(2):197-214. doi:10.1111/hae.14492 16. Cnossen MH, van Moort I, Reitsma SH, et al. SYMPHONY consortium: Orchestrating personalized treatment for patients with bleeding disorders. J Thromb Haemost. 2022;20(9):2001-2011. doi:10.1111/jth.15778 17. Teela L, Luijten MAJ, Kuijlaars IAR, et al. Psychometrics of the patient-reported outcomes measurement information system measures in hemophilia: the applicability of the pediatric item banks. Res Pract Thromb Haemost. 2023;7(6):102159. doi:10.1016/j.rpth.2023.102159

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