CISCRP and the ASH Research Collaborative to Engage Sickle Cell Disease Community

CISCRP Research Services is excited to announce a collaboration with the ASH Research Collaborative (ASH RC).  The ASH RC was established by the American Society of Hematology to foster collaborative partnerships, accelerate progress in hematology, and improve the lives of people affected by blood diseases. The ASH RC is working with CISCRP, the organization’s community engagement partner, to facilitate a series of national interactive workshops designed to engage the local Sickle Cell Disease (SCD) communities and learn about their most important needs as it relates to emerging treatment options.  In addition, the workshops will aim to find the best ways to raise awareness of and increase participation in clinical trials for SCD. 

The learning from the workshops will lead to the development of an SCD Patient-Oriented Research Priority Report to be shared with SCD patient and medical professional communities. Findings from the workshops will also generate a long-term, multi-pronged patient engagement plan to accelerate treatment development for SCD.

CISCRP will plan and execute eight half-day community-based workshops targeting four distinct SCD community populations – parents of children living with SCD, adolescents, young adults transitions from pediatric to adult care, and adults living with SCD. All workshops will be conducted during the first year of the project in the following US cities: Orlando, FL; Atlanta, GA; Washington, DC area; New York, NY; Los Angeles, CA; Oakland, CA; Chicago, IL, and Houston, TX.

The workshops’ primary objectives will be to:

  • Better understand experiences of those living with SCD and the communication channels/support systems used by each of the four SCD community population segments and their families; evaluate experiences accessing clinical care and treatments 
  • Assess current level of awareness, knowledge, and perception of clinical research; map decision-making process
  • Identify the most critical clinical trial considerations for each SCD patient population segment and their families
  • Cultivate trust and partnerships with local communities by engaging key community leaders to participate in the workshop

We at CISCRP would like to thank ASH RC for their collaboration and for their relentless work to engage patients along the journey to finding answers for sickle cell disease.

Written by Annick Anderson, Director of Research Services

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