ASH Research Collaborative

Accelerating Progress in Hematology

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Patient Engagement and Education Subcommittee

Chair
  • Sophie Lanzkron, MD
Appointed Members
  • Kyle Arrington Smith, MS
  • Raymona Lawrence
  • Carolyn Rowley, PhD
  • Pat Corley, RN
  • Minochy Delanois
  • Mapillar Dahn
  • Riley Dews
  • Tiahna Hughes
  • Hertz Nazaire
  • Phillip Okwo
  • Jemela Williams
  • Nilda Navedo
Staff Liaison
  • Shauna Whisenton

Committee Mandate

The ASH Research Collaborative® Sickle Cell Disease Clinical Trials Network is a mission-driven research effort using a collaborative network of clinical trial research sites, a comprehensive patient engagement approach, and optimized clinical trial operations focused on advancing the development of new and more effective therapeutics for individuals with sickle cell disease.

The Patient Engagement and Education Subcommittee, a subcommittee of the SCD Network Oversight Committee, guides the SCD Network leadership on the development and implementation of the patient engagement plan and is charged with developing meaningful engagement with patients in clinical trials, as well as patient resources and educational materials.

The membership of the Patient Engagement and Education Subcommittee consists of 12 members – the majority of whom represent the patient community (patients or caregivers) – and one health literacy expert. Members participate in regular conference calls and email discussions as necessary.

The Chair of the Patient Engagement and Education Subcommittee serves as a liaison member of the SCD Network Oversight Committee which convenes as necessary via conference call and up to three in-person meetings per year.