On April 10, 2023, the Joint Clinic for Rare Diseases of PUMCH officially opened, receiving 29 patients with rare diseases on the first day of operation. Six specialists from the Department of Cardiology, Nephrology, Gastroenterology, Hematology, Pediatrics and Neurology, in three adjacent consultation rooms on the 5th floor of the outpatient building, provide more efficient and convenient “clustered” diagnosis and treatment services for patients with rare diseases. This is a new approach under the PUMCH model of a cluster of disciplines working in a “patient-centered” manner.

▲Group picture of medical professionals working in the first joint clinic for rare diseases

Led by President Zhang Shuyang, the rare disease team always set its sights on the “patient-centered” care as they march forward unwaveringly. The join clinic mainly serves rare disease patients who face difficulties in obtaining clear diagnosis and proper treatment and need multidisciplinary care. Unlike the rare disease MDT scheduled for every Thursday where specialists from multiple disciplines attend to one patient, the joint clinic is characterized by multiple specialists attending to multiple patients, which enables further process optimization for patients and better utilization of the specialists’ time and attention. For example, in the joint clinic of nephrology, one outpatient unit alone referred 2 patients to the Department of Neurology, 2 to Cardiology, 1 to Orthopedics Surgery, and 1 to Endocrinology. The patients referred to Neurology and Cardiology received “one-stop” care on the day of referral.

▲In one consultation room of the joint clinic for rare diseases, a 6-year-old patient was first examined by Ma Mingsheng (left), Assistant Director of the Department of Pediatrics and then Guo Xiaoxiao (right), Assistant Director of the Department of Cardiology

▲In one consultation room of the joint clinic, Chen Limeng, the Director of the Department of Nephrology, was receiving a patient

Digging into intractable clinical issues is another aspiration of doctors. “Under the leadership of President Zhang Shuyang and support of key special programs of clinical research, we are doing research together with innovative enterprises with the hope of alleviating patients’ suffering as soon as possible,” said Chen Limeng.

▲Picture of Zhuang Junling, Deputy Director of the Department of Hematology, with a family member of a patient outside the joint clinic

From the granting of approval to the opening of the joint clinic, only a week was needed. The rare disease team, the Department of Outpatient, the Department of Human Resources, the Information Technology Center, and Department of Endocrinology, among others, together pulled it off with their efficiency and coordination, a perfect case in point about getting things done with accelerated speed at PUMCH. Progressing from the rare disease MDT to the joint clinic, PUMCH has never ceased to explore innovative diagnosis and treatment models for rare diseases. Its efforts have paid off, as the joint clinic further shortens the time needed, reduces the cost for patients and improves the efficiency per consultation unit.

Written by Chen Xiao and Chen Mingyan

Pictures courtesy of Sun Liang and Zhuang Junling

Edited by Xiao Xiong and Wang Yao

Translated by Liu Haiyan