Project Summary

In our Tier II project, we are engaging the community (Village) in a collaborative process that leads to the development of research questions that are relevant to the sickle cell disease (SCD) community and that have the potential to make a real-world difference in the quality of life by improving patient outcomes. We expect that this will ultimately lead to healthier outcomes and to reduced health disparities. SCD is a hereditary blood disorder associated with severe pain and life-threatening complications. Although it affects all ethnic groups, SCD primarily affects people of African, Hispanic, Mediterranean, and Asian descent. Patients face a lifetime of serious health issues. For example, research suggests that approximately 30 percent of children with SCD have difficulties with school achievement (i.e., performance levels in academic subject areas). Other difficulties associated with SCD can cause anemia and fatigue. However, due to improvements in health care, many adults with SCD are able to live fuller lives. There is therefore a need to focus on educating them about treatment options and available resources. This will lead individuals with SCD to live more productive and independent lives as adults. In many sickle cell households, extended family members play key support roles. Yet, anecdotal evidence from attendees at previous events suggests that, often, relatives and friends of affected families do not have a clear understanding of how the disease is acquired. It’s important that everyone in the Village is informed and invited to learn how to bring change through research. This project is guided by the voice of the patient.

View Tier I Award

Project Information

Mary Bentley LaMar
The Sickle Cell Association of New Jersey
$25,000

Key Dates

12 months
2016

Tags

Award Type
State State The state where the project originates, or where the primary institution or organization is located. View Glossary
Last updated: March 4, 2022