top of page

MPNE publications

Publications by MPNE network members, the link to the publication can be found under the title and MPNE authors are indicated in red.

Survival is not enough: understanding the mental burden of cutaneous melanoma.

Egeler MD, Ryll B.Br J Dermatol. 2024 Feb 3:ljae050. doi: 10.1093/bjd/ljae050. Online ahead of print.PMID: 38308617 No abstract available.

A New Framework for Co‑Creating Telehealth for Cancer Care with the Patient Community

Bonnie Addario, Violeta Astratinei, Louise Binder, Jan Geissler, Marcia K. Horn, Linda U. Krebs, Bryan Lewis, Kathy Oliver, Andrew Spiegel

Patient​ 2023 Jul 26.doi: 10.1007/s40271-023-00642-x. Online ahead of print.

Uncertainty management in regulatory and health technology assessment decision-making on drugs: guidance of the HTAi-DIA Working Group.

Hogervorst MA, Vreman R, Heikkinen I, Bagchi I, Gutierrez-Ibarluzea I, Ryll B, Eichler HG, Petelos E, Tunis S, Sapede C, Goettsch W, Janssens R, Huys I, Barbier L, DeJean D, Strammiello V, Lingri D, Goodall M, Papadaki M, Toussi M, Voulgaraki D, Mitan A, Oortwijn W.Int J Technol Assess Health Care. 2023 Jun 16;39(1):e40. doi: 10.1017/S0266462323000375.PMID: 37325997 

Recommendations for robust and reproducible preclinical research in personalised medicine.

Fosse V, Oldoni E, Bietrix F, Budillon A, Daskalopoulos EP, Fratelli M, Gerlach B, Groenen PMA, Hölter SM, Menon JML, Mobasheri A, Osborne N, Ritskes-Hoitinga M, Ryll B, Schmitt E, Ussi A, Andreu AL, McCormack E; PERMIT group.BMC Med. 2023 Jan 8;21(1):14. doi: 10.1186/s12916-022-02719-0.PMID: 36617553 

Control participants of randomised trials: an often forgotten, vulnerable population.

Mohyuddin GR, Mehra N, Ryll B, Prasad V.Lancet Haematol. 2022 Sep;9(9):e634-e636. doi: 10.1016/S2352-3026(22)00254-X.PMID: 36055323 

[Current clinical research landscape in Germany-an interdisciplinary position paper].

Grünwald V, Bethge W, Blohmer JU, Burkhardt B, Dirksen U, Ebert M, Gschwend J, Gutzmer R, Henn D, Hermann K, Isbary G, Klußmann JP, Knauf W, Krause M, Luntz S, Paradies K, Piso P, Ryll B, Schmidt G, Sinn M, Stintzing S, Wedding U, Wesselmann S, Reinacher-Schick A.Onkologe (Berl). 2022;28(Suppl 1):19-22. doi: 10.1007/s00761-022-01106-x. Epub 2022 Jan 28.PMID: 35106031

Improved pyrexia-related outcomes associated with an adapted pyrexia adverse event management algorithm in patients treated with adjuvant dabrafenib plus trametinib: Primary results of COMBI-APlus.

Atkinson V, Robert C, Grob JJ, Gogas H, Dutriaux C, Demidov L, Gupta A, Menzies AM, Ryll B, Miranda F, Banerjee H, Lau M, Del Vecchio M.Eur J Cancer. 2022 Jan 13;163:79-87. doi: 10.1016/j.ejca.2021.12.015. Online ahead of print.PMID: 35042070

Information Patients With Melanoma Spontaneously Report About Health-Related Quality of Life on Web-Based Forums: Case Study.

Kalf RRJ, Delnoij DMJ, Ryll B, Bouvy ML, Goettsch WG.J Med Internet Res. 2021 Dec 7;23(12):e27497. doi: 10.2196/27497.PMID: 34878994 

The impact of COVID-19 on cancer care and oncology clinical research: an experts’ perspective

Sessa C, Cortes J, Conte P, Cardoso F, Choueiri T, Dummer R, Lorusso P, Ottmann O, Ryll B, Mok T, Tempero M, Comis S, Oliva C, Peters S, Tabernero J.ESMO Open. 2021 Nov 23;7(1):100339. doi: 10.1016/j.esmoop.2021.100339. 

The Porto European Cancer Research Summit 2021.

Ringborg U, Berns A, Celis JE, Heitor M, Tabernero J, Schüz J, Baumann M, Henrique R, Aapro M, Basu P, Beets-Tan R, Besse B, Cardoso F, Carneiro F, van den Eede G, Eggermont A, Fröhling S, Galbraith S, Garralda E, Hanahan D, Hofmarcher T, Jönsson B, Kallioniemi O, Kásler M, Kondorosi E, Korbel J, Lacombe D, Carlos Machado J, Martin-Moreno JM, Meunier F, Nagy P, Nuciforo P, Oberst S, Oliveiera J, Papatriantafyllou M, Ricciardi W, Roediger A, Ryll B, Schilsky R, Scocca G, Seruca R, Soares M, Steindorf K, Valentini V, Voest E, Weiderpass E, Wilking N, Wren A, Zitvogel L.Mol Oncol. 2021 Oct;15(10):2507-2543. doi: 10.1002/1878-0261.13078. Epub 2021 Sep 13.PMID: 34515408 

Digital health applications-patient-centric care with disruptive potential.

Ryll B. Bundesgesundheitsblatt Gesundheitsforschung Gesundheitsschutz. 2021 Oct;64(10):1207-1212. doi: 10.1007/s00103-021-03421-x. Epub 2021 Sep 3.PMID: 34477883 

Improved pyrexia-related outcomes associated with an adapted pyrexia adverse event (AE) management algorithm in patients (pts) treated with adjuvant dabrafenib + trametinib (dab + tram): Primary results of COMBI-APlus.

Victoria AtkinsonCaroline RobertJean-Jacques GrobHelen GogasCaroline DutriauxLev V. DemidovAvinash GuptaAlexander M. MenziesBettina RyllFlora MirandaHiya BanerjeeMike R. LauMichele Del Vecchio DOI: 10.1200/JCO.2021.39.15_suppl.9525 Journal of Clinical Oncology 39, no. 15_suppl (May 20, 2021) 9525-9525.

Critical Issues in Melanoma Follow-up and Treatment, Safety of Patients and Communication with Healthcare Professionals During Covid-19 Pandemic in Romania

Violeta Astratinei, Andreea Strambu-Dima, Bettina Ryll Journal of Medical and Radiation Oncology 1 (2021) 15-33 DOI: 10.53011/JMRO.2021.01.02

Patient-reported outcomes for monitoring symptomatic toxicities in cancer patients treated with immune-checkpoint inhibitors: A Delphi study

André Manuel Da Silva Lopes, Sara Colomer-Lahiguera, Nuria Mederos Alfonso, Veronica Aedo-Lopez, Gilliosa Spurrier-Bernard, Lærke Kjær Tolstrup, Helle Pappot, Sandrine Aspeslagh, Anne Rogiers, Bart Neyns, John B. Haanen, Sandra A. Mitchell, Alfredo Addeo, Olivier Michielin, Manuela Eicher, European Journal of Cancer, 2021

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).


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

​Ryll, B., Spurrier, G., and Astratinei, V. (2020). Research OUTREACH, 117. Available at:

Essential Requirements for Uveal Melanoma Guidelines- learnings from the first MPNE patient consensus meeting.

B. Ryll*, V. Astratinei, I. Dogaru, A. Evans, I. Galloway, J. Gumbs, E. Näsman, T. Rimmer, G. Spurrier-Bernard, A. Woraker, F. Östman 

Poster, ECRD 2020.


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.

1114PAll.Can initiative: improving efficiency in cancer care

Aapro, M.S.Chrostowski, S.Florindi, F.Gandouet, B.Hanna, S.Hazarika, R.Hess, Lorenzo, F.Muthu, V.Oliver, K.Roediger, A.Rosvall-Puplett, T.Ryll, B.Spurrier, G.Steinmann

Annals of Oncology, Vol 28, September, 2017

DOI: 10.1093/annonc/mdx375.002

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.

Towards sustainable cancer care: Reducing inefficiencies, improving outcomes—A policy report from the All.Can initiative

Suzanne Wait, Daniel Han, Vivek Muthu, Kathy Oliver, Szymon Chrostowski, Francesco Florindi, Francesco de Lorenzo, Benjamin Gandouet, Gilliosa Spurrier, Bettina Ryll, Lieve Wierinck, Thomas Szucs, Rainer Hess, Titta Rosvall-Puplett, Alexander Roediger, Jason Arora, Wendy Yared, Sabrina Hanna, Karin Steinmann, Matti Aapro,
Towards sustainable cancer care: Reducing inefficiencies, improving outcomes—A policy report from the All.Can initiative,
Journal of Cancer Policy, Volume 13, 2017, Pages 47-64, ISSN 2213-5383,

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.


UM Cure 2020 − A consortium of European experts in uveal melanoma to identify new therapies for patients with metastatic disease

Dhomen, Nathalie & Marais, R. & Jager, Martine & Snaar-Jagalska, B. Ewa & Romanowska-Dixon, Bozena & Mione, Marina & Valente, A. & Ryll, Bettina & Ruijtenbeek, Rob & Prestat, A. & Vinolo, Emilie & Roman-Roman, S.. UM Cure 2020 July 2016 European Journal of Cancer. 61. S204-S205. ​DOI:10.1016/S0959-8049(16)61722-7

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.

bottom of page