We propose to engage our patients and others from the nontraditional research community in identifying areas they consider important for comparative research that will lead to increased use of medical and nonmedical resources for individuals affected by sickle cell disease (SCD) in New Jersey. 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. Research suggests that approximately 30% of children with SCD have difficulties with school achievement (performance levels in academic subject areas). Other difficulties can be caused by anemia and fatigue. Many adults with SCD are able to live fuller lives. With improvements in health care, there is a greater need to focus on educating those with SCD about treatment options and utilizing 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 (relatives, friends, members of the church) play key support roles. Yet, anecdotal evidence from attendees at previous Sickle Cell Association of New Jersey events suggests that a number of people—often relatives and friends of affected families—do not have a clear understanding of how the disease is acquired. This project will be guided by the voice of the patient.
VIDEO (below): Research Driven by Patients
This Pipeline to Proposal award works with patients with sickle cell disease to determine which research questions are most important to them.