MPNEsupport Org 802492-1069, Sweden

Melanoma Patient Network Europe

Updated April 2021, BR

MPNE publications

Pubmed-listed publications only, link to the publication under the title, MPNE authors in bold

Global Collaborative Social Network (Share4Rare) to Promote Citizen Science in Rare Disease Research: Platform Development Study.
Radu R, Hernández-Ortega S, Borrega O, Palmeri A, Athanasiou D, Brooke N, Chapí I, Le Corvec A, Guglieri M, Perera-Lluna A, Garrido-Aguirre J, Ryll B, Nafria Escalera B.JMIR Form Res. 2021 Mar 29;5(3):e22695. doi: 10.2196/22695.

​Early discontinuation of PD-1 blockade upon achieving a complete or partial response in patients with advanced melanoma: the multicentre prospective Safe Stop trial.
Mulder EEAP, de Joode K, Litière S, Ten Tije AJ, Suijkerbuijk KPM, Boers-Sonderen MJ, Hospers GAP, de Groot JWB, van den Eertwegh AJM, Aarts MJB, Piersma D, van Rijn RS, Kapiteijn E, Vreugdenhil G, van den Berkmortel FWPJ, Hoop EO, Franken MG, Ryll B, Rutkowski P, Sleijfer S, Haanen JBAG, van der Veldt AAM.BMC Cancer. 2021 Mar 25;21(1):323. doi: 10.1186/s12885-021-08018-w.

From good to great: What patients can do for your medical research.

Ryll, B.  Nat Med 26, 1508 (2020). https://doi.org/10.1038/s41591-020-1097-8

​​V2A2: A tool to promote patient agency through effective patient information

​Ryll, B., Spurrier, G., and Astratinei, V. (2020). Research OUTREACH, 117. Available at: https://researchoutreach.org/articles/v2a2-tool-promote-patient-agency-effective-patient-information/

Systemic Therapy for Melanoma: ASCO Guideline.
Seth R, Messersmith H, Kaur V, Kirkwood JM, Kudchadkar R, McQuade JL, Provenzano A, Swami U, Weber J, Alluri KC, Agarwala S, Ascierto PA, Atkins MB, Davis N, Ernstoff MS, Faries MB, Gold JS, Guild S, Gyorki DE, Khushalani NI, Meyers MO, Robert C, Santinami M, Sehdev A, Sondak VK, Spurrier G, Tsai KK, van Akkooi A, Funchain P. J Clin Oncol. 2020 Mar 31:JCO2000198. doi: 10.1200/JCO.20.00198. [Epub ahead of print]

No other interest can take precedence - a patient's perspective on oncology drug development.
Ryll B.
Nat Rev Clin Oncol. 2019 Aug;16(8):461-462. doi: 10.1038/s41571-019-0230-4. 

So Close, yet so Far: Discrepancies between Uveal and Other Melanomas. A Position Paper from UM Cure 2020.
Rodrigues M, Koning L, Coupland SE, Jochemsen AG, Marais R, Stern MH, Valente A, Barnhill R, Cassoux N, Evans A, Galloway I, Jager MJ, Kapiteijn E, Romanowska-Dixon B, Ryll B, Roman-Roman S, Piperno-Neumann S; UM Cure 2020 Consortium.
Cancers (Basel). 2019 Jul 22;11(7). pii: E1032. doi: 10.3390/cancers11071032.

Uveal Melanoma: A European Network to Face the Many Challenges of a Rare Cancer.
Piperno-Neumann S, Piulats JM, Goebeler M, Galloway I, Lugowska I, Becker JC, Vihinen P, Van Calster J, Hadjistilianou T, Proença R, Caminal JM, Rogasik M, Blay JY, Kapiteijn E.
Cancers (Basel). 2019 Jun 13;11(6). pii: E817. doi: 10.3390/cancers11060817.

Social media as a tool for assessing patient perspectives on quality of life in metastatic melanoma: a feasibility study.
Makady A, Kalf RRJ, Ryll B, Spurrier G, de Boer A, Hillege H, Klungel OH, Goettsch W; GetReal Workpackage 1.
Health Qual Life Outcomes. 2018 Nov 29;16(1):222. doi: 10.1186/s12955-018-1047-z.

ECCO essential requirements for quality cancer care: Melanoma.
Wouters MW, Michielin O, Bastiaannet E, Beishon M, Catalano O, Del Marmol V, Delgado-Bolton R, Dendale R, Trill MD, Ferrari A, Forsea AM, Kreckel H, Lövey J, Luyten G, Massi D, Mohr P, Oberst S, Pereira P, Prata JPP, Rutkowski P, Saarto T, Sheth S, Spurrier-Bernard G, Vuoristo MS, Costa A, Naredi P.
Crit Rev Oncol Hematol. 2018 Feb;122:164-178. doi: 10.1016/j.critrevonc.2017.12.020. Epub 2018 Jan 2. Review.

Patient value: Perspectives from the advocacy community.
Addario BJ, Fadich A, Fox J, Krebs L, Maskens D, Oliver K, Schwartz E, Spurrier-Bernard G, Turnham T.
Health Expect. 2018 Feb;21(1):57-63. doi: 10.1111/hex.12628. Epub 2017 Sep 20. Review.

Proceedings of the Association for Research in Vision and Ophthalmology and Champalimaud Foundation Ocular Oncogenesis and Oncology Conference.
Smith JR, Pe'er J, Belfort RN, Cardoso F, Carvajal RD, Carvalho C, Coupland SE, Desjardins L, Francis JH, Gallie BL, Gombos DS, Grossniklaus HE, Heegaard S, Jager MJ, Kaliki S, Ksander BR, Maeurer M, Moreno E, Pulido JS, Ryll B, Singh AD, Zhao J, Parreira A, Wilson DJ, O'Brien JM.
Transl Vis Sci Technol. 2018 Jan 9;8(1):9. doi: 10.1167/tvst.8.1.9. eCollection 2019 Jan.

Practical implications of using real-world evidence (RWE) in comparative effectiveness research: learnings from IMI-GetReal.
Makady A, Stegenga H, Ciaglia A, Debray TP, Lees M, Happich M, Ryll B, Abrams K, Thwaites R, Garner S, Jonsson P, Goettsch W.
J Comp Eff Res. 2017 Sep;6(6):485-490. doi: 10.2217/cer-2017-0044. Epub 2017 Aug 31.

Improving Patient Involvement in Medicines Research and Development:: A Practical Roadmap.
Geissler J, Ryll B, di Priolo SL, Uhlenhopp M.
Ther Innov Regul Sci. 2017 Sep;51(5):612-619. doi: 10.1177/2168479017706405. Epub 2017 May 8.

Personalized medicine in Europe: not yet personal enough?
Di Paolo A, Sarkozy F, Ryll B, Siebert U.
BMC Health Serv Res. 2017 Apr 19;17(1):289. doi: 10.1186/s12913-017-2205-4. Review.

The European Cancer Patient's Bill of Rights, update and implementation 2016.
Højgaard L, Löwenberg B, Selby P, Lawler M, Banks I, Law K, Albreht T, Armand JP, Barbacid M, Barzach M, Bergh J, Cameron D, Conte P, de Braud F, de Gramont A, De Lorenzo F, Diehl V, Diler S, Erdem S, Geissler J, Gore-Booth J, Henning G, Horgan D, Jassem J, Johnson P, Kaasa S, Kapitein P, Karjalainen S, Kelly J, Kienesberger A, La Vecchia C, Lacombe D, Lindahl T, Luzzatto L, Malby R, Mastris K, Meunier F, Murphy M, Naredi P, Nurse P, Oliver K, Pearce J, Pelouchov J, Piccart M, Pinedo B, Spurrier-Bernard G, Sullivan R, Tabernero J, Van de Velde C, van Herk B, Vedsted P, Waldmann A, Weller D, Wilking N, Wilson R, Yared W, Zielinski C, Zur Hausen H, Le Chevalier T, Johnston P.
ESMO Open. 2017 Jan 6;1(6):e000127. doi: 10.1136/esmoopen-2016-000127. eCollection 2016. Review.

Incorporating patient preferences into drug development and regulatory decision making: Results from a quantitative pilot study with cancer patients, carers, and regulators.
Postmus D, Mavris M, Hillege HL, Salmonson T, Ryll B, Plate A, Moulon I, Eichler HG, Bere N, Pignatti F.
Clin Pharmacol Ther. 2016 May;99(5):548-54. doi: 10.1002/cpt.332. Epub 2016 Feb 17.