The Children's Hospital of Fudan University in Shanghai holds a small ceremony to celebrate the recovery of a girl from Pakistan in May. [Provided to chinadaily.com.cn]
The research ward at the Children's Hospital of Fudan University in Shanghai has admitted more than 200 patients with difficult-to-diagnose rare diseases from home and abroad since its opening in July 2024, the hospital said on Thursday.
Pediatric rare and difficult-to-diagnose diseases include a wide range of conditions. About 72 percent of rare diseases are genetic, often affecting multiple organ systems and accounting for 35 percent of infant mortality causes. Diagnosing rare diseases in children is a worldwide challenge. On average, it takes between four to eights years from the first appearance of symptoms to a final diagnosis, according to experts.
The hospital said the research ward, covering an area of 3,000 square meters with 60 beds, was established to respond to such challenges.
One of the latest patients was a 2-month-old baby from South Africa suspected of suffering from Krabbe disease. The infant was taken to the Shanghai hospital for medical consultation and received a personalized treatment plan, including hematopoietic stem cell transplantation, at the ward earlier this month.
Doctors treat a child patient at the research ward at the Children's Hospital of Fudan University in Shanghai. [Provided to chinadaily.com.cn]
A total of 32 projects, including registered clinical trials and investigator-initiated trials, have been conducted at the research ward from July last year to November this year. These projects cover 12 clinical specialties, such as neurology, hematology, nephrology, surgical oncology, hepatology, dermatology, and the intensive care unit.
Statistics from the hospital showed that it has handled around 220,000 rare disease cases to date, covering roughly 30 percent of known rare disease types.
A multidisciplinary team organized by Wang Yi, president of the Children's Hospital of Fudan University in Shanghai, conducts a medical consultation for a minor patient from Bangladesh on Sept 11. [Provided to chinadaily.com.cn]
"Efforts will continue to actively promote innovation in rare disease clinical research, basic translation, new technology application, talent cultivation systems, and the effective utilization of global collaborations and social resources," Wang Yi, president of the hospital, said.
"Also, the hospital will leverage the comprehensive advantages of Fudan University, fulfilling its role as a national children's medical center, and promote advancement in technology translation and innovative medical services to benefit more families with children suffering from difficult and rare diseases," she said.
