Connect & Inform - Overview
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A Virtuous Circle
To accelerate progress towards a cure for SMARCB1 cancers, we need to create a virtuous circle, where all stakeholders in the SMARCB1 world can connect, share information and resources, raise awareness, and learn from each other: patients, pathologists, treating oncologists, scientific researchers, and patient groups.Many hospitals and oncologists the world over are unaware of SMARCB1 cancers and the challenges that SMARCB1-deficiency in cancer presents. This means that many SMARCB1 cancers are misdiagnosed, and many patients receive ineffective and toxic treatments. We must change this and raise awareness so all SMARCB1 cancer patients get an accurate diagnosis and information they can count on, and all oncology teams are aware of the most promising treatments available for their patient’s particular SMARCB1 cancer.
At the same time, scientists the world over need a more developed and open access research infrastructure so they can work towards more effective and promising treatments for SMARCB1 cancers. Researchers need tools like cell lines and animal models which can only be derived from fresh tumor tissue from SMARCB1 cancer patients. They need centralized information they can access on patient experiences and treatments so they can better understand what works best. As things stand now, SMARCB1 patient data and information are scattered, siloed, or plainly lost.
SMARCB1 patients and their treating oncologists are key to giving SMARCB1 researchers what they need to change status quo! By donating tumor and blood samples to specialized laboratories and by ensuring that patient medical records and experiences are accurately recorded into a centralized data system, researchers will have what they need most to come up with better therapeutics and save patients’ lives.
Let’s work together. It’s a virtuous circle.
Your Story Counts
SMARCB1 Hope is partnered with MyPART (My Pediatric and Adult Rare Tumors Network at the National Cancer Institute, USA), one of the world’s foremost rare cancer research centers with a particular interest in SMARCB1 tumors. Wherever you are in the world, and at no cost to you and potentially great benefit, you can enroll remotely in MyPART’s Natural History Study of Rare Tumors and help push SMARCB1 science forward. They care and will get back to you!
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Donate Your Tumor Tissue
If you are scheduled for surgery, and live in the US, we encourage you to donate your living tumor tissue to Pattern at the Rare Cancer Research Foundation. At no cost to you – and at an enormous benefit to the SMARCB1 cancer research world – Pattern will collect and deliver your de-identified tumor tissue to cutting edge laboratories which can then develop cell lines and mouse models essential for accelerating progress towards a cure for SMARCB1 cancers.
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Find Your People
Getting a SMARCB1 cancer diagnosis is scary, and you may feel very alone, confused, and lost. Dedicated foundations, associations, and patient support groups can provide invaluable information, resources, and support. Here you can find some focused on different SMARCB1 cancers. Please tell us about others!
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Clinical Trials
Treatment options for SMARCB1 cancers are aggressive – intense surgery, chemotherapy, and radiotherapy – and are unfortunately only effective for a minority of patients and associated with severe sequelae.
Clinical trials offer hope. They try new drugs and new drug combinations, new surgical procedures or devices, or new ways to use existing treatments. A clinical trial might be right for you.
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