2021 VIRTUAL SPAEN Annual Conference
2021 VIRTUAL SPAEN Annual Conference: April 22-24, 2021
11th SPAEN Annual Conference: Virtual, global, informative and collaborative
The ongoing pandemic and the decision to hold the SPAEN 2021 Annual Conference as a virtual meeting has allowed us to have even more participants in 2021! Over 200 registered participants attended the SPAEN Conference 2021 with internationally leading sarcoma experts and patient advocates representing organizations covering all subtypes of sarcomas or subtype-specific groups for e.g. desmoids, chordomas, leiomyosarcomas or bone cancer.
The three half days were full of learning about medical topics ranging from the status of research in sarcomas, case studies, updates on new approaches in sarcomas. But also capacity building about patient involvmenent in clinical research and evidence was part of the meeting.
Programme
See the agenda here
Presentations and Recordings
Day 1 - 22.04.2021
| Opening of the SPAEN Conference 2021 | Recording |
| Session 1: Spotlight on... | |
| Biopsy: How is it done? Quality/mistakes, prognosis/center Piotr Rutkowski, POL |
PDF download Recording |
| Diagnosis: Insights from Sarcoma UK / BCRT survey Dr. Sorrel Bickley/Tobi Firth, UK |
PDF download Recording |
| Session 2: Development and diagnosis of metastasis, disease-specific patterns and local treatment options |
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| Radiologist/surgery (diagnosis) Nicos Fotiadis, UK |
PDF download Recording |
| Oncologist Robin Jones, UK |
PDF download Recording |
| Session 3: Immunotherapy incl. gene cell therapy | |
| An overview Joanna Szkandera, AT |
PDF download Recording |
Day 2 - 23.04.2021
| GIST Track | Soft Tissue Sarcoma Track | Bone Sarcoma Track | Desmoid Track |
| New compounds in GIST: Avapritinib & Ripretinib Jon Trent, US PDF download Recording |
Elderly outcomes in clinical trials and priorities of patients starting palliative chemotherapy Eugenie Younger, UK PDF download Clinical trials in elderly metastatic sarcoma patients; challenges and future directions Winette van der Graaf, NL PDF download |
The role of EMSOS in Europe Andreas Leithner, AT RecordingImproving the understanding of primary bone cancer Judith Bovee, NL PDF download Recording |
Challenges in exploiting medical therapies for desmoid tumors Bernd Kasper, DE PDF download Recording Updates Italian studies pregnancy and desmoids Desmoid Foundation IT Recording |
| Three GIST Case Studies Mikael Eriksson, SWE Recording can be made available on request |
Uterine LMS – Profile, diagnosis and challenges Roberta Sanfilippo, IT PDF download |
Oncology (treatments) and biomarker landscape Sue Burchill, UK PDF download Recording |
Quality of life project Anne-Rose Schut, NL PDF download Recording Results from Cryodesmo Study Jean-Emanuel Kurtz, FR PDF download Recording |
| Long-term survivorship on TKIs Clinical aspects Hans Gelderblom, NL PDF download RecordingPatient discussions on forumsas data source for adverse drug reaction Anne Dirkson, NL PDF download Recording |
Research Update Robin Jones, UK PDF download |
Clinical trials in bone sarcomas Sandra Strauss, UK PDF download Recording Patient story on resilience Kate Surman, UK Recording |
Day 3 - 24.04.2021
| Session 1: Patient Involvement in clinical research | Recording |
| Introduction Markus Wartenberg, DE |
PDF download |
| Overview & Case Study Roger Wilson, UK |
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| PPRN Survey: Overview & Results Gerard v. Oortmerssen, NL |
PDF download |
| Session 2: Evidence | |
| Evidence from a scientific point of view (Scientific evidence – evidence level – Challenges in rare diseases – criteria of regulators) Jaap Verweij, NL |
PDF download Recording |
| Evidence-based advocacy Zack Pemberton-Whiteley, UK |
PDF download Recording |
SPAEN Advocacy in Action Award 2020 winners have been announced!
In 2017, we announced the “SPAEN Advocacy in Action Award” for the first time and were amazed to receive such high-quality, outstanding and interesting submissions during the last years. Reason enough for us to continue to make some noise about the projects and initiatives that are being implemented each day, each month or each year in various countries.
However, we acknowledge that we all face a different situation due to the coronavirus pandemic. This confronts all of us with new challenges, but also creates room for new and innovative ideas and solutions.
Giving credit to this new situation, we decided to award two prices for the “SPAEN Advocacy in Action Award 2020”:
• One prize for one for traditional patient advocacy projects and
• one for innovative COVID-19 related projects
The winner in the category "COVID-19 related projects" is:
SPANDAN/VCare - see project summary here.
The two winners in the caterory "Traditional patient advocacy projects" are:
Bone Cancer Research Trust (see project summary here) and Polish Sarcoma and Melanoma Group see project summary here.
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See here all the submitted projects.
Further information
- SPAEN 2020 Annual Conference Booklet
- Presentations of the SPAEN Conference 2020
- The SPAEN Clinical Sarcoma Research Paper on "The challenge of sarcomas: the patient advocacy group perspective"
- Video of the 2020 Annual Conference
Any questions? Please contact us at info@sarcoma-patients.eu