NICHQ’s Sickle Cell Work Highlighted in Special Supplement to AJPM

Posted June 16, 2016 by Cindy Hutter

Sickle Cell Supplement
The American Journal of Preventive Medicine

Two articles related to NICHQ’s portfolio of sickle cell projects are featured in a special sickle cell supplement of the American Journal of Preventive Medicine out today, in advance of World Sickle Cell Day June 19.

“It is great to see NICHQ’s longtime collaborative work in SCD get attention in this way and ultimately help multiple stakeholders involved in the care of individuals with SCD and sickle cell trait improve processes of care and potentially suggest opportunities for future policy or practice-based interventions,” says Suzette Oyeku, MD, MPH, medical director for NICHQ’s sickle cell disease portfolio and associate division chief for Academic Affairs in the Division of Academic General Pediatrics at the Children’s Hospital at Montefiore.

In an article titled “Quality Indicator Development for Positive Screen Follow-up for Sickle Cell Disease and Trait,” authors share how nine quality improvement indicators were developed during NICHQ’s Sickle Cell Disease Newborn Screening Program, funded by the Health Resources and Services Administration. The indicators focus on key aspects of follow-up care for individuals with positive screens for SCD and trait. They can be used by providers, healthcare institutions and public health programs to gauge the quality of care for children identified with SCD through newborn screening programs and assess whether public health screening goals have been achieved.

“One of the primary foci of the indicators is to ensure children who had a positive screen for SCD are enrolled in the appropriate care and their families received requisite genetic counseling and information about their condition,” says paper author and longtime project leader for NICHQ’s portfolio of sickle cell projects, Elissa Faro, PhD.

Further studies are needed to better document the association between process of care measures and healthcare utilization and outcomes. Authors note that there are currently no recommendations about the appropriate process for screening new immigrants in the U.S. or older children, adolescents or adults who were not screened as infants for SCD. Future directions might also include expanding the evidence base for screening for hemoglobin disorders beyond the newborn period, which can inform future development of quality of care indicators.

A Decade of SCD Work

In 2007, researchers and health leaders from the Centers for Disease Control and Prevention, the Health Resources and Services Administration, the Agency for Healthcare Research and Quality and the National Institutes of Health participated in a Sickle Cell Summit to develop a comprehensive research agenda on sickle cell disease (SCD). Federal funding over the past decade have been used to implement this agenda through the support of basic research studies, public health activities, and community and education programs. 

The American Journal of Preventive Medicine SCD supplement showcases the findings from a subset of the federally funded efforts and focuses on four areas of opportunity that were outlined at the Sickle Cell Summit: 

  •  access to care from knowledgeable health care providers in a patient-centered medical home 
  • basic, clinical, translational and health services research • population-based surveillance to measure outcomes 
  • an enhanced role of the community 

Together, the articles underscore the public health impact of SCD as well as the vital work being done to reduce its burden on families, healthcare providers, healthcare systems and individuals living with this condition.


The second article, “Improving Sickle Cell Transitions of Care through Health Information Technology,” based on a NICHQ project of the same name in collaboration with Lewin Group, shares the results from research to inform the development of a health information technology-enabled tool for use by patients with SCD during care transitions, either from inpatient to outpatient care or pediatric to adult care settings.

The research “did not reveal an existing suitable transition tool, but patients, parents, providers and IT experts saw the potential and appeal of creating a tool to meet the health information needs in the ED and thus improve care transitions,” according to the article.

The supplement was designed to highlight the work of several sickle cell disease (SCD) projects funded by the Centers of Disease Control and Prevention. Oyeku, Jean Raphael and Mary Hulihan—all members of the NICHQ-led Sickle Cell Disease Treatment Demonstration Program—served as guest editors for the supplement.



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