Karl Schwartz, Bio / Advocacy CV

 Karl Schwartz

artist & advocate for patients, democracy, and the planet 

Artist

BA - RIT | BFA - Maryland Institute of Art | MFA - Brooklyn College
About | Paintings | Figurative Drawings 


Patient Advocacy
Previously

Patient representative to FDA (Advisory Committee)
President and founder - Patients Against Lymphoma
Member - NCI Centralized Institutional Review Board
- adult early phase cancer research
Member - NCI Steering Committee,
Co-chair NCI Patient Advocate Committee
Member: AACR Joint Scientific Advisory Committee - Stand Up to Cancer
Faculty - AACR/ASCO Methods in Clinical Cancer Research Workshop 

Patient community advocacy - formerly: 

  • Moderator of support forums for patients and caregivers with lymphoma since 1997 – continuing on a volunteer basis. 

  • President and co-founder of Patients Against Lymphoma (since 2002- 2018) with focus on advancing the well-informed and routine consideration of clinical trials. 

  • Developed Trial-Talk: a registry of independent lymphoma and CLL experts to consult about clinical trials as part of a second opinion. 

  • Author - Citizens Petition to the Food and Drug Administration Assessing Changes to the Patient’s Quality of Life (QoL) is Integral to Interpreting the Efficacy of Study Treatments for Cancer www.lymphomation.org/QoL-FDA-petition.pdf 

Experiences: 

  • Member, NCI CIRB (Centralized Institutional Review Board)
    Adult Early Phase Emphasis - 2014 to 2019 

  • ASCO-Friends of Cancer Research
    Modernizing Eligibility Criteria Project- HIV Working Group Member - 2016 

  • Alliance Cooperative Group (formerly CALGB) 2010 to 2018
    Lymphoma and Patient Advocate Committees 

  • Study author, “Interest, Attitudes and Participation in Clinical Trials among Patients with Lymphoma,” published by ASCO in 2009. http://ascopubs.org/doi/abs/10.1200/jco.2009.27.15_suppl.e19514 

  • AACR - 2012 Joint Scientific Advisory Committee, Stand Up to Cancer,

  •  NCI Patient Advocates Steering Committee (co-chair) 2016 

  •  NCI Lymphoma Steering Committee 2013 – 2016 

  • FDA Patient Representative and Consultant program 2001 - 2017; advisory committee deliberations (Fragmin, Romidepsin, Pralatrexate, Pixantrone) 

  • Faculty, clinical research workshops: AACR/ASCO, 2011- 2014
    “Methods in Clinical Cancer Research, 

  • FDA, NCI, ASCO, and Duke University, 2009
    Accelerating Anticancer Agent Development and Validation Workshop,

  • NCI Progress Review Group for Blood Cancers, 2001 

  • NCI Biospecimen Best Practices, 2005 and 2007: 
    Biospecimen Access: Ethical, Legal Policy - Custodianship and Ownership Issues in Biospecimen Research

  • NCI Technical Evaluation Panel, 2005: “Development of a Common Biospecimen Coordination System for NCI Prostate SPORE,” 

  • The Patient-Centered Outcomes Research Institute (PCORI) –
    Certified by Training to become a Merit Reviewer, January 2013

  • Author - Mandatory Exploratory Biopsies:
    A checklist for study reviewers and the study team 

  • Co-author: Proposing the Observation-enriched Randomized Controlled Trial (ORCT)- a hybrid allocation study design to consider when the gold-standard RCT is not feasible or ethical

Speaker: 

  • Leigh Thompson Renaissance Conference by invitation, 2005
    “Patient Perspectives on Trial Design: The Demand for Innovation vs. Safety 

  • Adaptive Trials Design Innovation Conference, Washington DC, 2006:
    “Patient Perspectives on Accelerating Safer Drug Development” 

  • National Press Club, 2005 “Announcing The Cancer Genome Atlas Project” 

  • Patient Representatives FDA Workshop, 2008
    “Close Calls - Perspectives, Preparations and Participation on FDA Advisory Meetings
     (Keeping an Open Mind, Preparations, What to Expect) 

  • “Evaluating Online Medical & Support Information”
    Sponsor: Leukemia and Lymphoma Society, 2010 

  • Cancer and Leukemia Group B meeting, Miami, 2010:
    “The Reasons Patients Participate in Clinical Trials
    – based on their unique clinical circumstances”
==
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