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
Paintings | Figurative Drawings

Patient Advocate

Formerly:

Patient representative to FDA (ODAC) President of Patients Against Lymphoma CIRB member - adult early phase cancer research NCI Steering Committee, Co-chair NCI Patient Advocate Committee Faculty - AACR/ASCO Methods in Clinical Cancer Research Workshop at Vail

Lymphoma Topics

Patient community advocacy: 

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

Recent experiences as research advocate: 

• 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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