$10.5M NIH Grant to Fund Sickle Cell Research in Delaware

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by Marisa Wexler MS |

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The National Institutes of Health (NIH) has awarded a $10.5-million grant to support several research projects seeking to improve care for people with sickle cell disease (SCD).

Research will focus on children and young adults, and on combating racism and other barriers to proper healthcare. SCD disproportionately affects Black populations and people of Afro-Caribbean and Middle Eastern descent.

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The five-year grant from the NIH Center of Biomedical Research Excellence was awarded to researchers at Nemours Children’s Health in support of the Delaware Comprehensive Sickle Cell Research Program. Research will be carried out by a diverse coalition of investigators at Nemours and other institutions.

This grant builds on a previous NIH grant that enabled investigators at Nemours to create partnerships among the local SCD community, ultimately leading to the enrollment of more than 800 participants in SCD studies.

“Because of earlier NIH funding in this area, we have local SCD patients participating in nationally funded trials, ensuring that our communities are part of large studies pursuing important questions about SCD,” Mary Lee, MD, enterprise chief scientific officer for Nemours, said in a press release.

“With this new grant, these communities play a central role, with each project incorporating patient and family feedback — even engaging them in how we design and conduct the research — which is essential to understand their experience of systemic and/or healthcare-associated racism and its effects on SCD outcomes,” Lee said.

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In two of the newly funded projects, researchers will work with patients and families to identify barriers to proper healthcare, including racism, disease stigma, knowledge about SCD, and patients’ ability to manage symptoms on their own. The team will also come up with strategies to overcome these obstacles, and create a toolkit to help people use SCD treatments more effectively.

The team will also test a peer-mediated group intervention for adults with SCD, which will focus on the management of chronic pain, and how racism and stigma play into pain management.

“One reason that sickle cell care has struggled relative to other pediatric diseases is in part because pain is one of its top symptoms, which can elicit a bias related to opioid seeking,” said Anders Kolb, MD, director of the Nemours Center for Cancer and Blood Disorders, and principal investigator of the project.

“In addition, a sickle cell patient may describe their pain as severe, but their doctor may not know how to assess pain in a patient with sickle cell who has pain frequently, and the result is often undertreatment of the pain. If a patient thinks a provider is minimizing their symptoms, they may become reluctant to seek timely care and to trust their provider’s recommendations,” Kolb said.

In other projects, researchers will evaluate perceptions of newborn screening for SCD among patients and clinicians. They will also assess the usefulness of eye exams as a noninvasive way of testing patients for potential serious complications of SCD, like strokes, and will work to incorporate newborn screening results and sickle cell trait carrier status into electronic health records at hospitals. The ultimate goal is to improve care, particularly for young children.

“Sickle cell disease begins manifesting at birth, so how we manage a two-year-old impacts their life when they’re 40,” Kolb said.