2021 VIRTUAL SPAEN Annual Conference

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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
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
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-WhiteleyUK
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.

VCare SPANDAN 1st proze COVID related projects final

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.

 SPAEN 2021 Advocay Award 2020 RZ Bone Cancer Research Trust  SPAEN 2021 Advocay Award 2020 RZ Polish Sarcoma and Melanoma Group

See here all the submitted projects.

Further information

Any questions? Please contact us at info@sarcoma-patients.eu