Lisa Shook, MA, MCHES.

Lisa Shook will oversee a $2.5 million HRSA grant to improve care for people with sickle cell disease.

Cincinnati Children’s is developing a six-state network to improve the treatment of sickle cell disease and increase the number of people with access to care.

The “Sickle Treatment and Outcomes Research in the Midwest” (STORM) project recently earned a three-year, $2.5 million grant from the Health Resources and Services Administration (HRSA). Lisa Shook, MA, MCHES, in the Division of Hematology, serves as principal investigator.

The new network will share data, educate, and connect primary care providers with specialists to improve outcomes for adults and children with sickle cell disease, particularly those challenged by chronic poverty or who live in rural areas with limited access to treatment.

The project seeks to expand the availability of disease-modifying therapies, specifically hydroxyurea and periodic blood transfusions, and plans to address the disparities in care for adult patients in acute-care settings.

Shook, who specializes in newborn screening and chronic disease management, is also principal investigator for the Cincinnati Sickle Cell Newborn Screening Network, another HRSA-funded project.

The STORM network is modeled after several Cincinnati Children’s initiatives to treat chronic illnesses, each supported by the James M. Anderson Center for Health Systems Excellence.

“We will utilize strategies and lessons learned from these other projects,” says Shook. “Leveraging partnerships throughout the region will be an important step in reaching as many providers and underserved patients as possible.” The project will serve Ohio, Indiana, Illinois, Michigan, Minnesota and Wisconsin, providing a central information system to engage state health departments, newborn screening programs, community-based organizations, advocacy groups and patients.