Shannon van Hoorn

120 Chapter 4 REFERENCES 1. Dover S, Blanchette VS, Srivastava A, Fischer K, Abad A, Feldman BM. Clinical outcomes in hemophilia: Towards development of a core set of standardized outcome measures for research. Res Pract Thromb Haemost. 2020;4(4):652-658. doi:10.1002/rth2.12331 2. Limperg PF, Terwee CB, Young NL, et al. Health-related quality of life questionnaires in individuals with haemophilia: a systematic review of their measurement properties. Haemophilia. 2017;23(4):497-510. doi:10.1111/hae.13197 3. van Balen EC, O'Mahony B, Cnossen MH, et al. Patient-relevant health outcomes for hemophilia care: Development of an international standard outcomes set. Res Pract Thromb Haemost. 2021;5(4):e12488. doi:10.1002/rth2.12488 4. Iorio A, Skinner MW, Clearfield E, et al. Core outcome set for gene therapy in haemophilia: Results of the coreHEM multistakeholder project. Haemophilia. 2018;24(4):e167-e172. doi:10.1111/hae.13504 5. Skinner MW, Chai-Adisaksopha C, Curtis R, et al. The Patient Reported Outcomes, Burdens and Experiences (PROBE) Project: development and evaluation of a questionnaire assessing patient reported outcomes in people with haemophilia. Pilot Feasibility Stud. 2018;4(1):58. doi:10.1186/s40814-018-0253-0 6. Terwee CB, Zuidgeest M, Vonkeman HE, Cella D, Haverman L, Roorda LD. Common patient-reported outcomes across ICHOM Standard Sets: the potential contribution of PROMIS(R). BMC Med Inform Decis Mak. 2021;21(1):259. doi:10.1186/ s12911-021-01624-5 7. Broderick JE, DeWitt EM, Rothrock N, Crane PK, Forrest CB. Advances in PatientReported Outcomes: The NIH PROMIS((R)) Measures. EGEMS (Wash DC). 2013;1(1):1015. doi:10.13063/2327-9214.1015 8. Heesterbeek MR, Luijten MAJ, Gouw SC, et al. Measuring anxiety and depression in young adult men with haemophilia using PROMIS. Haemophilia. 2022;28(3):e79e82. doi:10.1111/hae.14534 9. van Balen EC, Haverman L, Hassan S, et al. Validation of PROMIS Profile-29 in adults with hemophilia in the Netherlands. J Thromb Haemost. 2021;19(11):26872701. doi:10.1111/jth.15454 10. Kuijlaars IAR, Teela L, van Vulpen LFD, et al. Generic PROMIS item banks in adults with hemophilia for patient-reported outcome assessment: Feasibility, measurement properties, and relevance. Res Pract Thromb Haemost. 2021;5(8):e12621. doi:10.1002/rth2.12621

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