For nearly 20 years, Julie Panepinto, M.D., MSPH, has been involved in chronic disease research and caring for children with sickle cell disease, a painful genetic blood disorder. It’s been her heartfelt passion, she said. So when the COVID-19 pandemic hit, Panepinto was determined not to let shutdowns and tragedies stop her in her tracks. Concerned that her sickle cell disease patients might be disproportionately affected by the fast-moving coronavirus, Panepinto spearheaded the establishment of an international registry (the SECURE-SCD Registry) to collect data on clinical outcomes of COVID-19 patients who also had sickle cell disease.
Within months the database began to reveal what Panepinto had suspected: that people with the disease were far more vulnerable to severe health complications from COVID-19 than the general population. These patients also had higher death rates. Now, researchers in countries near and far are using the registry to identify risk factors that help explain this vulnerability and possibly help save lives.
“We’re just starting to learn more about the link between sickle cell and COVID and more data is being added each week from healthcare providers from around the world,” Panepinto said.
The database is just one of many accomplishments that have marked the career of this physician scientist. Panepinto is formerly the director of the Center for Clinical Effectiveness Research in the Children’s Research Institute at the Medical College of Wisconsin/Children’s Hospital of Wisconsin. She was also a professor of pediatric hematology there. Although her research has mostly focused on children with sickle cell, she expanded her research to other areas including cancer, diabetes, and asthma.
In June 2021, Panepinto left academia to join the National Heart, Lung, and Blood Institute (NHLBI) as the deputy director of its Division of Blood Diseases and Resources (DBDR).
Panepinto credits good mentors and role models -- including other women scientists – with helping guide her career, and she currently serves as a mentor to others. In her spare time, she particularly enjoys reading biographies of women scientists. “It’s inspiring to read about those who came before,” Panepinto said. One of her most recent biographical reads is a book (“The Code Breaker”) about Jennifer Doudna, the Nobel-prize winning biochemist who helped develop the CRISPR gene editing tool. That tool is now being explored by researchers to produce something near to her heart: a gene-editing cure for sickle cell disease.
Learn more about Julie Panepinto, M.D.