Öffentlichkeitsarbeit


Eugenio Mercuri, Valeria Sansone, Sonia Messina, Jacqueline Montes, Amy Pasternak, Erik Henrikson, Anna Lia Frongia, Mencia de Lemus, Nicole Gusset, Mary Scroth, Dylan Trundell, Marcus Droege, Ivana Rubino, Francesco Muntoni on behalf of the SMA PROM working group. PATIENT AND PARENT ORIENTED TOOLS TO ASSESS HEALTH-RELATED QUALITY OFLIFE, ACTIVITY OF DAILY LIVING AND CAREGIVER BURDEN IN SMA. 2020 (accepted). Neurological Disorders, XXX.

Fani Petridis, Senam Beckley-Kartey, Dylan Trundell, Hannah Staunton, Rakesh Kantaria, Florian Lipsmeier, Michael Lindemann, Kristina Gelblin, Ksenija Gorni, Sangeeta Jethwa, Tim Seabrook, Omar Khwaja, Nicole Gusset, Mencia de Lemus, Vitaliy Matyushenko, Inge Schwersenz, Michael Ostland. 2020. Creating systematic and meaningful partnerships with the spinal muscular atrophy (SMA) community for therapy development. 10th European Conference on Rare Diseases, Virtual Meeting, 15-16 May 2020.

D. Trundell, R Hall, D Ramsey, S Kaur, J Braid, K Tinsley, R Arbuckle, S Jethwa, L Belter, R Cruz, K Hobby, J Jarecki, K Bowyer, O Dabbous, K Johnson, H Staunton, I Schwerzsenz, N Gusset, K Gorni. 2019. Qualitative research to explore the patient and caregiver-reported experience of symptoms and impacts in Type 2 and 3 spinal muscular atrophy (SMA) – the development of a conceptual model. Cure SMA Congress, Anaheim, USA. (family friendly poster).

D Trundell, A Skalicky, A Hareendran, O Cooper, H Staunton, F Petridis, T Seabrook, K Gorni, N Gusset, I Schwersenz, S Ewing. 2019. New Measures of Function and Independence in Spinal Muscular Atrophy (SMA). Cure SMA Congress, Anaheim, USA. (family friendly poster).

Dylan Trundell, Rebecca Hall, Danielle Ramsey, Sharan Kaur, Jessica Braid, Katie Tinsley, Rob Arbuckle, Sangeeta Jethwa, Lisa Belter, Rosangel Cruz, Kenneth Hobby, Jill Jarecki, Kristina Bowyer, Omar Dabbous, Beatriz Duque, Kristen Johnson, Sarah Kulke, Hannah Staunton, Inge Schwerzsenz, Nicole Gusset, Ksenija Gorni and Richard Finkel. 2019. Qualitative research to explore the patient and caregiver-reported experience of symptoms and impacts in Type 2 and 3 spinal muscular atrophy (SMA) – the development of a conceptual model. Cure SMA Researcher Meeting, 23rd International SMA Research Meeting, Anaheim, USA. (Poster)

Kristina Gelblin, Tim Seabrook , Ksenija Gorni , Jane Ives , Christian Czech , Dominik Kraus, Dylan Trundell , Pia Somugompely , Mencia de Lemus Belmonte , Inge Schwersenz , Ria Broekgaarden , Nicole Gusset, Joanna Mitchell , Kacper Ruciński , Serge Braun , Karen Chen , Kelly Howell , Ying Qian , John Baird , Alexandra Freitas , Nikolai Naryshkin , Sangeeta Jethwa. Partnering with Patients in the Roche and Genentech Spinal Muscular Atrophy program. 2018. Cure SMA, USA. (family friendly poster).

Françoise Rouault, Vanessa Christie-Brown, Ria Broekgaarden, Nicole Gusset, Doug Henderson, Patryk Marczuk, Inge Schwersenz, Gil Bellis, Christian Cottet. 2018. Disease impact on general well-being and therapeutic expectations of European Type II and Type III spinal muscular atrophy patients. Poster, International Scientific Congress on Spinal Muscular Atrophy, Krakow. (Poster)

Françoise Rouault, Vanessa Christie-Brown, Ria Broekgaarden, Nicole Gusset, Doug Henderson, Patryk Marczuk, Inge Schwersenz, Gil Bellis, Christian Cottet. 2017. Disease impact on general well-being and therapeutic expectations of European Type II and Type III spinal muscular atrophy patients. Cure SMA. (Poster)


T Seabrook, K Gelblin, K Gorni, T Wiese, A Marquet, C Czech, D Kraus, D Trundell, B Verwee, I Schwersenz, K Rucinski, N Gusset, S Braun, J Baird, K Chen, M Harmon, N Naryshkin, S Paushkin, S Jethwa
. 2017. Patient partnership in SMA. Cure SMA. (Poster)

Rouault, F., Christie-Brown, V., Broekgaarden, R., Gusset, N., Hendrson, D., Marczuk P., Schwersenz, I., Bellis, G., Cottet. C. 2017. Disease impact on general well-being and therapeutic expectations of European Type II and Type III spinal muscular atrophy patients. Neuromuscular Disorders, Vol. 27(5):428-438.

Gusset, N. 2018. The Patient Journey. Roche Seminar 13 June 2018, ICNMD 2018, Vienna. (presentation and panel discussion)

Gusset, N. 2018. Was bringt mir der medizinische Fortschritt? Roche Turmgespräch. 25. September 2018, Basel. (panel discussion)

Gusset, N. 2019. Patient im Fokus: Mitgestaltung am Beispiel von SMA. reatch, 16. September 2019, Bern. (presentation and panel discussion)

Gusset, N. 2020. The Coming of Age of Gene Therapy for SMA. Exploring the patient and family perspectives. AveXis Seminar 7th February 2020, 2. International Scientific Congress Spinal Muscular Atrophy, Evry, France. (presentation and panel discussion)

Gusset, N. 2020. SMArt Expectations – Results from the European Patient Expectation Survey 2019 (EUPESMA-2019). 2. International Scientific Congress Spinal Muscular Atrophy, Evry, France. (presentation)