The safety registry will identify adverse events and can be used as a foundation for long-term treatment safety studies. “There are significant benefits to all stakeholders, including patients, families, clinicians, and biopharmaceutical companies. Every barrier is eliminated, so you can look at an actual treatment and whether it works or not,” Dr. Sandborg said.
Although pediatric rheumatologists once feared their subspecialty would disappear, it is now thriving, Dr. Sandborg concluded. “We improved the pipeline of talent. We created a research network to improve care. We established governance and guiding principles,” she said. “We are not a village, but a city, and that includes patients, families, and pediatric rheumatologists.”
Susan Bernstein is a writer based in Atlanta.
