TAMPA, Fla. — Tampa General Hospital is the first hospital in Florida to the Sunshine Genetics Newborn Screening Program, a voluntary pilot program.
Dr. Tara Randis, chair of pediatrics at TGH Muma Children’s Hospital, said that newborns are typically screened for about 60 conditions. This will expand newborn testing to 750 genetic conditions to help families find diagnoses and access treatments sooner.
The program is personal for Palm Harbor state Rep. Adam Anderson and his wife, Brianne, who lost their son Andrew to Tay-Sachs disease when he was four years old. Anderson said there was a long period when the family did not know what disease they were dealing with.
“My hope for this pilot program is that it will lead to a statewide initiative and that will prove the case that it makes sense to add genomic newborn screening to our statewide panel,” Anderson said.
Randis said expanded screening could help reduce the time it takes some families to get a diagnosis.
“We know that one in 10 Americans can be affected by a rare disorder, and up to 80% of this is genetic,” Randis said. “Oftentimes, when children present with signs and symptoms, it can take, on average, four to five years sometimes to reach a diagnosis.”
Randis said the hospital is in the final phase before the program launches and expects to enroll its first family soon.
Participation will be voluntary for every family, Tampa General Hospital said. The pilot initiative is authorized for five years, with hopes it could expand across Florida and beyond.