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Example Publications

Most of my work is confidential, but a few examples of publications in which I have been publicly acknowledged as a medical writer are listed below.

Rare Diseases

  • Wijburg FA, Whitley CB, Muenzer J, et al. Intrathecal heparan-N-sulfatase in patients with Sanfilippo syndrome type A: A phase IIb randomized trial. Mol Genet Metab. 2019;126(2):121-130. doi: 10.1016/j.ymgme.2018.10.006.

  • Mattera M, Vernon MK, Raluy-Callado M, Mikl J. Validation of the shortened Hunter Syndrome-Functional Outcomes for Clinical Understanding Scale (HS-FOCUS). Health Qual Life Outcomes. 2018;16(1):209. Published 2018 Nov 8. doi:10.1186/s12955-018-1006-8

  • Whitley CB, Cleary M, Eugen Mengel K, et al. Observational Prospective Natural History of Patients with Sanfilippo Syndrome Type B. J Pediatr. 2018;197:198-206.e2. doi: 10.1016/j.jpeds.2018.01.044. 

  • Zelei T, Csetneki K, Vokó Z, Siffel C. Epidemiology of Sanfilippo syndrome: results of a systematic literature review. Orphanet J Rare Dis. 2018;13(1):53. Published 2018 Apr 10. doi:10.1186/s13023-018-0796-4

  • Aygören-Pürsün E, Soteres D, Moldovan D, et al. Preventing Hereditary Angioedema Attacks in Children Using Cinryze®: Interim Efficacy and Safety Phase 3 Findings. Int Arch Allergy Immunol. 2017;173(2):114-119. doi:10.1159/000477541

  • Longhurst HJ, Zanichelli A, Caballero T, et al. Comparing acquired angioedema with hereditary angioedema (types I/II): findings from the Icatibant Outcome Survey. Clin Exp Immunol. 2017;188(1):148-153. doi:10.1111/cei.12910 

  • Sinert R, Levy P, Bernstein JA, Body R, Sivilotti MLA, Moellman J, Schranz J, Baptista J, Kimura A, Nothaft W; CAMEO study group. Randomized Trial of Icatibant for Angiotensin-Converting Enzyme Inhibitor-Induced Upper Airway Angioedema. J Allergy Clin Immunol Pract. 2017 Sep-Oct;5(5):1402-1409.e3. doi: 10.1016/j.jaip.2017.03.003. 

  • Aygören-Pürsün E, Bygum A, Beusterien K, et al. Estimation of EuroQol 5-Dimensions health status utility values in hereditary angioedema. Patient Prefer Adherence. 2016;10:1699-1707. Published 2016 Sep 6. doi:10.2147/PPA.S100383

  • Li HH. Self-administered C1 esterase inhibitor concentrates for the management of hereditary angioedema: usability and patient acceptance. Patient Prefer Adherence. 2016;10:1727-37. doi: 10.2147/PPA.S86379. 

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Oncology

  • Siefker-Radtke AO, Necchi A, Park SH, et al. Efficacy and safety of erdafitinib in patients with locally advanced or metastatic urothelial carcinoma: long-term follow-up of a phase 2 study. Lancet Oncol. 2022;23(2):248-258. doi: 10.1016/S1470-2045(21)00660-4. 

  • Burke GAA, Beishuizen A, Bhojwani D, et al. Ibrutinib plus CIT for R/R mature B-NHL in children (SPARKLE trial): initial safety, pharmacokinetics, and efficacy. Leukemia. 2020;34(8):2271-2275. doi:10.1038/s41375-020-0749-5

  • Fraser GAM, Chanan-Khan A, Demirkan F, et al. Final 5-year findings from the phase 3 HELIOS study of ibrutinib plus bendamustine and rituximab in patients with relapsed/refractory chronic lymphocytic leukemia/small lymphocytic lymphoma. Leuk Lymphoma. 2020;61(13):3188-3197. doi:10.1080/10428194.2020.1795159

Osteoarthritis

  • Sconza C, Romano D, Scaturro D, et al. Safety and Efficacy of Hybrid Cooperative Complexes of Sodium Hyaluronate and Sodium Chondroitin for the Treatment of Patients with Symptomatic Knee Osteoarthritis. Rheumatol Ther. 2024;11(2):381-395. doi: 10.1007/s40744-024-00643-8.

© 2021 by Papyrus Medical Communications Ltd.

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