In a brand new interview, Dr. Shantanu Banerji, co-chair for the Sarcoma Disease Site Committee for the Canadian Cancer Trials Group, was invited to provide his insight into sarcomas - his history studying them, the types of sarcomas, treatments available, and how global connectivity is providing new opportunities for patients to connect with one another on a scale never before seen.

A few years since its inception as a national research project, CanSaRCC has progressed rapidly and is powering advances in our understanding of sarcoma, with over 20 member organizations participating across Canada.

Institutions from coast to coast are now pooling information on cases into a single national database. This is vital, as there are currently no reliable statistics on even the total number of patients diagnosed with each of the 70-plus subtypes of sarcoma in Canada. Creating this database is a huge undertaking, with enormous effort going into ensuring accuracy and data quality. CanSaRCC has now expanded their network to include pediatric centres, making the database a vital resource for research into sarcomas in children, adolescents and young adults.

Updates since launch include:

A database with detailed and reliable information about thousands of sarcoma cases.

A virtual biobank of biological samples that are a vital resource for research.

A tool for identifying clinical trials relevant to sarcoma.  

A multidisciplinary student mentorship program to spread knowledge of sarcoma among the next generation of clinicians and scientists.

Educational modules to ensure precise data entry.

Legal contracts and ethics protocols.

A public-facing website to raise awareness of sarcoma research: cansarcc.ca  

A comprehensive data dictionary and case studies to ensure all users across Canada enter data the same way.

Tools for efficient data cleansing, data mapping and analysis.

RESEARCH INTO RARE FORM OF VASCULAR SARCOMA CANCER RECEIVES $1 MILLION IN FUNDING

Sarcoma Cancer Foundation of Canada Celebrates Largest Ever Investment in Canadian EHE Sarcoma Cancer Research

TORONTO, ON, July 5, 2022 – The Sarcoma Cancer Foundation of Canada is pleased to announce a one-million-dollar investment into an exciting new research initiative that will evolve the collective baseline of Epithelioid Hemangioendothelioma (EHE), a rare vascular form of a sarcoma. This Canadian-led research brings together an international team of experts and has the potential to create positive impacts for the EHE community in Canada, and around the world.

The PRO CARE EHE Research Team, led by Dr. Albiruni Abdul Razak, Medical Oncologist, Princess Margaret Hospital/Mount Sinai Hospital and Medical Oncology Lead, Sarcoma Site Group, Toronto Sarcoma Program, aims to better understand EHE demographics in patients, treatment patterns, and to prospectively identify clinical prognostic and predictive factors. In addition to these clinical research objectives, the study has ambitious goals for the identification and validation of novel biomarkers to inform patient management (prognosticators and predictors of response to medical agents), as well as potential therapeutic targets.  

“There is so much more we need to understand about EHE sarcoma in order to offer patients optimal care, and with this support from SCFC, our research has the potential to build on what we already know about the disease and lead us to new outcomes that can improve the lives of patients. We aim to deliver tangible knowledge that would directly impact patient care” says Dr. Razak.

Princess Margaret Hospital (PMH) in Toronto will serve as the Canadian site for this project, which will take place over the next five years.

“We at Princess Margaret Hospital are pleased receive this donation for EHE research from the SCFC. We are excited to be part of this project which will lay a strong foundation for EHE research in Canada, complementing PMH’s ongoing dedication to critical sarcoma cancer research,” noted Miyo Yamashita, President and CEO of Princess Margaret Hospital Foundation.

This grant represents the largest investment in EHE research in Canada to date.

“We are thrilled to be able to fund this incredibly exciting project and support this transformational work right here in Canada,” says Diana Arajs, Chair of the Sarcoma Cancer Foundation of Canada. “It’s an exciting time for our community and for all EHE sarcoma patients as we celebrate this landmark million-dollar investment.”

The research team includes scientific and clinical experts located at the Leslie Dan Faculty of Pharmacy, University of Toronto (Professor Christine Allen) Toronto, Institut Tumori in Milan, Italy (Drs S Stachiotti and N Zaffaroni) and the Royal Marsden, London United Kingdom (Drs R Jones and P Huang).

About the Sarcoma Cancer Foundation of Canada

The SCFC was founded in 2010 in memory of Vera Arajs and other Canadians who have lost their lives to sarcoma cancers. We are Canada’s national organization supporting sarcoma cancer patients and their families, while working with Canada's leading researchers in their efforts to eradicate the disease.

It is our mission to connect patients and their families with the best medical information and community resources, to ease the process of dealing with a sarcoma cancer diagnosis and treatment, while advocating on behalf of Canadian patients. We support advances in Canadian sarcoma cancer research and the connectivity of our sarcoma community.

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For more information please contact:

EthanPigott

416-558-2783

info@sarcomacancer.ca

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PRO CARE EHE Research Team Background Sheet

Principal Investigator

Dr. Albiruni Ryan Abdul Razak 

Dr. Albiruni Razak is a Clinical investigator and the lead for Medical Oncology in the Princess Margaret/Mount Sinai Hospital’s Sarcoma Site Group. He is also the Interim Director representing Sinai Health Systems Oncology and Medical Genetics Programs. After completing general medical residency, he completed oncology fellowships both in Ireland and England. Dr. Abdul Razak then undertook a drug development fellowship at the Princess Margaret and transitioned into staff position in 2013, with a focus on sarcoma and early drug development.

Co-Investigators

Professor Christine Allen

Professor Christine Allen is a Professor and the inaugural Associate Vice-President and Vice-Provost Strategic Initiatives at the University of Toronto. She completed her doctoral research in the Department of Chemistry at McGill University and post-doctoral research in the Department of Advanced Therapeutics at the B.C. Cancer Agency. She joined the University of Toronto in 2002 and has established a leading research group focused on the design of innovative materials and drug delivery technologies with over 140 peer-reviewed publications in her field. 

Dr. Abha Gupta

Dr. Abha Gupta received her MD at the University of Toronto.  She completed her pediatrics residency at Yale New Haven Children’s Hospital (New Haven, CT) and Children’s Hospital of Eastern Ontario (Ottawa) before moving back to Toronto to complete her fellowship in paediatric hematology/oncology at The Hospital for Sick Children. She is currently cross-appointed as a staff oncologist at both The Hospital for Sick Children (Solid Tumour Section) and Princess Margaret Cancer Center. She is the Medical Director of the Adolescent and Young Adult Oncology Program at Princess Margaret and Medical Director of the Canadian Sarcoma Research and Clinical Collaboration (CanSaRCC).

Dr. Silvia Stacchiotti

A medical oncologist, Dr. Silvia Stacchiotti has a life-time professional dedication to patient care and research in bone and soft tissue sarcoma (STS), and gastrointestinal stromal tumor (GIST). She works in the Adult Mesenchymal and Rare Tumor Medical Treatment Unit, Cancer Medicine Department at the Fondazione IRCCS Istituto Nazionale Tumori (Milan, Italy) where she is involved in all institutional research activities on sarcoma, with a special focus on ultra-rare sarcomas. Her works focuses on the identification of new treatments and treatment modalities for adult patients affected by sarcomas, starting from the localized to the advanced phase of disease.

Dr. Robin Jones

Dr. Robin Jones is Team Leader in Sarcoma Clinical Trials at The Institute of Cancer Research and Consultant Medical Oncologist at The Royal Marsden. He is a specialist in the treatment of bone and soft tissue sarcomas, and focuses on developing novel therapies for these diseases. In January 2010 he was appointed Associate Professor and Director of the Sarcoma Program at the University of Washington and Fred Hutchinson Cancer Research Center in Seattle. His laboratory work evaluated novel immunotherapeutic targets in bone and soft tissue sarcomas, and has led to a number of early-phase immunotherapeutic clinical trials. He has been principle investigator on numerous phase I, II and III trials.

Dr. Paul Huang

Dr. Paul Huang is Head of the Molecular and Systems Oncology Laboratory at The Institute of Cancer Research (ICR) in London, UK. He received his PhD in Biological Engineering from Massachusetts Institute of Technology in 2008. His laboratory focuses on understanding aberrant signalling networks and drug resistance in sarcomas, with the goal of developing biomarkers and new therapies for these rare diseases. Paul is the Deputy Director of the Joint Royal Marsden-ICR Sarcoma Research Centre, one of the largest sarcoma research centres in Europe. He also serves as Vice Chair of the Pathology & Translational Research Committee of the EORTC Soft Tissue and Bone Sarcoma Group.

Dr. Nadia Zaffaroni

Dr. Nadia Zaffaroni graduated with honours in Biological Sciences at the University ofMilan and received her Ph.D. in Applied Biotechnologies from the same University. She is the Director of the “Molecular Pharmacology” Unit in the Department of Applied Research and Technological Development, Fondazione IRCCS Istituto Nazionale dei Tumori of Milan, Italy. Her main area of investigation concerns translational research and is focused on the identification and validation of new therapeutic targets and predictive biomarkers as well as on the preclinical assessment of novel therapeutic strategies.

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As Canadians recognize the annual Sarcoma Cancer Awareness Week during the third week of June, the Sarcoma Cancer Foundation of Canada (SCFC) is proud to stand alongside our network of patients from coast-to-coast, to celebrate 10 years of collaboration and support. The Foundation has a series of activities planned to engage the community on key issues facing rare cancers in Canada, as well as working collectively with the medical community and government, to improve the landscape for anyone facing a sarcoma cancer diagnosis in Canada.

“Ten years ago if you were diagnosed with sarcoma cancer, there were little to no Canadian resources to help patients during a time of great uncertainty, anxiety and fear,” says Founder and Chair of the SCFC, Diana Arajs. “It is remarkable to reflect back on just how much this volunteer-run organization has accomplished in such a short amount of time. The research projects we have made possible have contributed in meaningful ways to the global effort looking at new treatment research and rare cancer mutations, and we’ve been able to contribute well-used and much needed patient resources and tools, as well as one-on-one patient counseling and support.”

Despite a decade of effort to advance the needs of patients and families, there is still much work to do. A survey conducted by the Foundation in 2018 found that those without a direct connection to sarcoma still don’t know enough when it comes to who is at risk, where it strikes in the body or what innovation looks like for this rare type of cancer. This was an improvement from a similar survey conducted in 2014 where alarmingly low awareness of sarcoma and its symptoms were reported. During the officially recognized annual awareness week(June 15 – 20), the Foundation and its ambassadors in provinces across the country will aim to dispel myths, correct misinformation, improve awareness, and raise funds for new sarcoma research.

Arajs remarks, “We are entering a very exciting time in the research of cancers generally, with new and innovative approaches to treatment. Sarcoma cancer, which has been disproportionally under- funded and under-recognized is making significant progress on the world-stage from a research perspective and we will continue to advocate on behalf of Canadian patients to ensure equitable access to the new frontier in cancer care.”

Although recognizing ten years of achievements during a global pandemic is challenging to do in person, the community is coming together to participate in virtual events planned in local communities to raise research funds and improve patient resources. SCFC urges all Canadians during the awareness week, even those who are not personally touched by sarcoma to help improve understanding of a rare cancer that can more commonly affect children, but also many adult men and women.

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About the Sarcoma Cancer Foundation of Canada

The SCFC was founded in 2010 in memory of Vera Arajs and other Canadians who have lost their lives to sarcoma cancers. We are a volunteer-run national organization supporting patients and their families, while working with Canada's leading researchers in their efforts to the disease.

It is our mission to connect patients and their families with the best medical information and community resources, to ease the process of dealing with a sarcoma cancer diagnosis and treatment.

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For more information please contact:

Ethan Pigott

416-558-2783

info@sarcomacancer.ca

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Rozlytrek® is an oral medicine that is used to treat NTRK gene fusion-positive tumours including many types of sarcoma.

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A great project helping to overcome some of the demographic challenges around studying angiosarcoma.

As part of our ongoing efforts to support cutting-edge research initiatives, we have been campaigning to raise $100,000 to support new research of targeted sarcoma treatments that we hope will improve patient outcomes and potentially revolutionize the way in which sarcoma is diagnosed and treated.

This brand new research will give patients with rare forms of soft tissue sarcoma (STS) faster, simpler, and more accurate diagnoses, so that their treatment can get started sooner. Since STS is not just one disease – there are over 50 types – patients often need to undergo a great deal of invasive testing, including surgical biopsies, to be diagnosed accurately.

Led by a collaborative team of scientists at Sinai Heath System’s Christopher Sharp Cancer Centre and Princess Margaret Cancer Centre, the research will use Next Generation Sequencing technologies to analyze the blood of patients with sarcoma, seeking distinctive ‘signatures’ that reveal their tumour’s specific mutations. With this detailed insight into the tumour’s characteristics and weaknesses, oncologists will be able to develop a blood test that allows them to diagnose rare types of STS with precision, and better guide treatment decisions.

This simple and minimally invasive ‘liquid biopsy’ could spare patients from undergoing invasive surgical biopsies to diagnose their tumour. Patients will be able to start treatment sooner (and with less stress to their body), and oncologists will be able to monitor the patient easily, using a simple blood test to determine if the tumour is shrinking.  

On behalf of Canadian patients and families living with sarcoma, we’re asking you to join us by contributing towards our goal of $100,000. Donate on our donate page or send a cheque to our mailing address to be a part of the future of sarcoma care.

There's always a need for more educational materials, and we're pleased to launch our updated SCFC Sarcoma Infographic. Revised to include up-to-date information, we've started distributing to clinics across Canada in order to help patients and their families learn more about this rare cancer. If you are interested in obtaining a physical or PDF copy please send us an email at info@sarcomacancer.ca.

SCFC is proud to support important strides being made across Canada! Some recent work on Alveolar Soft Part Sarcoma has now been published in the prestigious journal entitled Cancer Immunology Research, a publication of AACR (American Association for Cancer Research). Although involving a small number of patients, this is a phenomenal paper that may hopefully be used to justify access to checkpoint inhibitors for these patients.

New research provides a glimpse into what Canadians know about Sarcoma cancers. Read the full press release, just in time for Sarcoma Awareness Week!