All posts by CAC2

CAC2 Webinar–MyPART: My Pediatric and Adult Rare Tumors Network for Patient Engagement in Rare Solid Tumors Research

December 5, 2018
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December's All-Member Webinar was presented by Dr. Karlyne Reilly, Director of the Center for Cancer Research Rare Tumor Initiative at the National Cancer Institute. Rare tumors pose unique challenges for patients, their families, and the researchers working to develop new therapies. In this webinar Dr. Reilly reviewed these specific challenges and how increased patient engagement in rare tumor research can help to overcome them. MyPART is a patient engagement network being developed in the Center for Cancer Research at NCI focused on children, adolescents, and young adults with rare solid tumors. Dr. Reilly described the network being developed and the goals to [...] Read more

CAC2 Webinar–Functional and Social Independence in Adult Survivors of Pediatric Brain Tumors

November 1, 2018
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October's All-Member webinar was presented by Tara Brinkman, PhD, Assistant Member in the Departments of Epidemiology and Cancer Control and Psychology, St. Jude Children’s Research Hospital. Dr. Brinkman's recent, first-of-its- kind study sheds light on the degree of achievement of independence by survivors of pediatric brain tumors. Her talk highlighted the prevalence of independence and risk factors associated with non-independence in adult survivors. As part of the presentation, Dr. Brinkman reviewed the impact of independence on quality of life and emotional distress and discussed the implications for interventions. Read more

CAC2 Webinar–Understanding and Enhancing the Role of Children with Cancer and their Parents in Pediatric Oncology Drug Development

August 15, 2018
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This month's webinar was presented by Stacy Crane, Predoctoral Fellow at Indiana University School of Nursing.  She described the experience of participating in a Phase I clinical trial from the perspective of the parents of children battling cancer. While overall, parents do not regret their child participating in a phase I clinical trial and would recommend participation to other parents of children with cancer, there are implications for clinicians and researchers who work with children with cancer and their families. One way to improve experiences in early phase clinical trial participation is to ensure that the side effects that impact the patients during these [...] Read more

CAC2 Webinar–How Patient Driven Philanthropy is Driving Collaboration and Progress

February 14, 2018
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In February’s All-Member webinar, CAC2 members Joanne Salcido (Pediatric Brain Tumor Foundation) hosted Kristin Schneeman, Director of Programs at FasterCures, a center of the Milken Institute. Philanthropy can play an critical role as a catalyst for change in the medical research and development ecosystem. Over the last decade, many patient-driven foundations – big and small, old and new – have been taking a more strategic and entrepreneurial approach to their role as research funders and are driving collaboration and progress for the patients they represent. In this webinar, Schneeman,presented about some of the new funding models and collaborative activities in which foundations [...] Read more

CAC2 Webinar–Germline Predisposition to Pediatric Cancer: It’s More Common Than You Think

December 13, 2017
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In December's All-Member webinar, CAC2 members Ginger Diamond (Childhood Cancer Awareness Group of Coffee County) and Joanne Salcido (Pediatric Brain Tumor Foundation) hosted Dr. Sharon Plon from the Baylor College of Medicine, Texas Children's Hospital and Dr. Todd Druley of Washington University in St. Louis, speaking on pediatric cancer predisposition and genetic susceptibility. During this webinar, Drs. Sharon Plon and Todd Druley covered evidence suggesting that pediatric cancer, unlike adult cancers, has a significant contribution from germline genetic changes that skew normal childhood development. They also highlighted the approaches underway in the laboratory and clinic to address this issue including [...] Read more

CAC2 Webinar–The Role of the IRB in Clinical Trials: What Patients and Families Need to Know — SLIDE DECK

September 22, 2017
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In this month's All-Member webinar, Joanne Salcido of the Pediatric Brain Tumor Foundation introduced and hosted Dr. Marjorie Speers of the WCG Foundation.  The slide deck from the presentation is linked below. Dr. Speers's presentation described the clinical trial process and the role of the IRB in phase 1 – 4 clinical trials. During her webinar, she explained the differences between academic and independent IRBs and the challenges IRBs face when they review multi-site trials. She also described the revised regulations that are likely to go into effect in 2018 and how they should help to reduce the time it takes for an [...] Read more

CAC2 Webinar–A Personalized Precision Approach to Therapy for Neuroblastoma

May 26, 2017
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In this May's All-Member and Community Webinar, Gavin Lindberg (The EVAN Foundation) hosted physician investigators from the New Approaches to Neuroblastoma Therapy (NANT) clinical trials consortium who presented their work on defining genetic and biologic changes in a patient’s specific tumor that can be used to guide the development of novel more effective therapies, and the choice of therapy for an individual patient. They also discussed the implications of this approach to pediatric cancer in general. Dr. Shahab Asgharzadeh presented about New Approaches to Neuroblastoma Therapy (NANT) Precision Medicine Trial, identifying biomarkers for targeted and immune based therapies. Dr. Asgharzadeh [...] Read more

CAC2 Webinar–The Blood-Brain Barrier: What If You Could Get Drugs Across?

January 26, 2017
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In this January 2017  CAC2 All-Member webinar, we provided an opportunity to our members, associate members, student members, and supporting organizations to learn about emerging technology using ultrasound and microbubbles to deliver therapeutic agents across the blood-brain barrier.  Clay Larsen, President & CEO and Rhodemann Li, Founder, EVP Strategy & Finance, both of Vesselon, presented about their plans for this technology in the pediatric brain tumor population. The blood-brain barrier (BBB) is the body's natural defense mechanism to prevent toxins from entering the brain.  Unfortunately, it also prevents 99% of all therapeutic molecules from getting to their target to treat many diseases, [...] Read more
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