Together We Can Make A Difference
For Those Affected By Sarcomas!

11^th 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 pdf here (553 KB)

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 PDF download (6.91 MB) Recording
Diagnosis: Insights from Sarcoma UK / BCRT survey Dr. Sorrel Bickley/Tobi Firth, UK	pdf PDF download (2.59 MB) Recording
Session 2: Development and diagnosis of metastasis, disease-specific patterns and local treatment options
Radiologist/surgery (diagnosis) Nicos Fotiadis, UK	pdf PDF download (10.63 MB) Recording
Oncologist Robin Jones, UK	pdf PDF download (2.19 MB) Recording
Session 3: Immunotherapy incl. gene cell therapy
An overview Joanna Szkandera, AT	pdf PDF download (6.08 MB) 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 PDF download (2.09 MB) Recording	Elderly outcomes in clinical trials and priorities of patients starting palliative chemotherapy Eugenie Younger, UK pdf PDF download (1004 KB) Clinical trials in elderly metastatic sarcoma patients; challenges and future directions Winette van der Graaf, NL pdf PDF download (1.25 MB)	The role of EMSOS in Europe Andreas Leithner, AT Recording Improving the understanding of primary bone cancer Judith Bovee, NL pdf PDF download  (6.73 MB) Recording	Challenges in exploiting medical therapies for desmoid tumors Bernd Kasper, DE pdf PDF download (3.57 MB) 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 PDF download (24.53 MB)	Oncology (treatments) and biomarker landscape Sue Burchill, UK pdf PDF download (1.39 MB) Recording	Quality of life project Anne-Rose Schut, NL pdf PDF download (1.12 MB) Recording Results from Cryodesmo Study Jean-Emanuel Kurtz, FR pdf PDF download (4.84 MB) Recording
Long-term survivorship on TKIs Clinical aspects Hans Gelderblom, NL pdf PDF download (1.44 MB) Recording Patient discussions on forumsas data source for adverse drug reaction   Anne Dirkson, NL pdf PDF download (715 KB) Recording	Research Update Robin Jones, UK   pdf PDF download (5.43 MB)	Clinical trials in bone sarcomas Sandra Strauss, UK pdf PDF download (3.12 MB) 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 PDF download (817 KB)
Overview & Case Study Roger Wilson, UK
PPRN Survey: Overview & Results Gerard v. Oortmerssen, NL	pdf PDF download (827 KB)
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 PDF download (2.37 MB) Recording
Evidence-based advocacy Zack Pemberton-Whiteley, UK	pdf PDF download (2.29 MB) 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 pdf here (667 KB) .

The two winners in the caterory "Traditional patient advocacy projects" are:
Bone Cancer Research Trust (see project summary   pdf here (500 KB) ) and Polish Sarcoma and Melanoma Group see project summary   pdf here (581 KB) .

See here all the submitted projects.

Further information

• pdf SPAEN 2020 Annual Conference Booklet (2.21 MB)
• 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 

 

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