Using Community Based Research Practices to Advance Anti-Racism in Sickle Cell Disease Clinical Care

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The Sickle Cell 101 research team in collaboration with study investigator have reviewed this information to ensure it is patient-friendly and accurate.

About the Study

This study is being conducted by Sickle Cell 101, UCSF Benioff Children’s Hospitals, and BCH Diversity, Equity, Inclusion and Anti-Racism Council to address racism in SCD care.

Sickle cell disease (SCD) is a blood disorder that primarily affects Black and Brown people. Since it was identified in Western medicine in 1910, SCD has received fewer clinical, research and public health resources compared with other conditions. Further, individuals with SCD face tremendous barriers, including racism, as they seek to obtain needed healthcare.

This study aims to:

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  1. Update a community-based needs assessment to obtain patient/family voices about remedies for the structural and interpersonal racism that patients with SCD face in their healthcare.
  2. Refine and pilot BCH staff education and skills building about SCD care within an anti-racism framework.
  3. Increase knowledge and skills as a team to conduct community engaged research that better addresses SCD healthcare inequities.

The findings of this study will inform the development of new policies and practices to improve the quality of care for patients with SCD and create a more equitable healthcare system.

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Participation information

Countries

Global & Remote

Age

>18 years

Gender

All

Genotypes

All types of SCD

Study Information

Study type

Survey

Phase

N/A

Compensation

Participants will have the chance to receive a $25 gift card upon completion

Am I Eligible?

Requirements

You may be eligible to participate in this study if you:
  • Are 18 years or older
  • Have been diagnosed with sickle cell disease (SCD).
  • Are a parent or caregiver of someone diagnosed with sickle cell disease.
  • Have English proficiency.

Restrictions

You can't participate in this study if you:
  • Are less than 18 years of age
  • Have not been diagnosed with sickle cell disease (SCD) or do not have Sickle cell trait. Are not a parent or caregiver of someone diagnosed with sickle cell disease.
  • Have a lack of English proficiency.

Study point of contact

Marsha Treadwell, PhD, UCSF Department of Pediatrics, Division of Hematology
N/A
[email protected]
Enroll in this Study
Last updated November 30, 2024
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