On October 28, 2021, the Sixth National Outstanding Professional Technical Talents Commendation was held, which conferred the honorary title of “National Outstanding Team of Professional Technical Talents” on the PUMCH multidisciplinary team for complicated and difficult diseases and rare diseases.

Led by Zhang Shuyang, President of PUMCH, the multidisciplinary team for complicated and difficult diseases and rare diseases (hereinafter referred to as “the team”) is composed of experts from multiple departments of the hospital, including academicians of the Chinese Academy of Sciences and the Chinese Academy of Engineering, and Distinguished Young Scholars of the National Science Fund. But the majority of the team are frontline staff, including clinicians, pharmacists, geneticists, pathologists, testing and imaging specialists and young and middle-aged backbone staff with rich clinical experience. The team has made outstanding achievements in the fight against COVID-19, rare disease treatment and prevention, and multidisciplinary diagnosis and treatment of complicated and difficult diseases by seeking and sticking to scientific approaches and solutions.

In early 2020 when the COVID-19 epidemic broke out, the team led 186 medical professionals of PUMCH to aid Wuhan; they meticulously formulated personalized treatment plans for each patient, which led to a mortality rate of extremely critically ill patients treated by them lower than that in international coverage by nearly 30%, contributing PUMCH experience to the global fight against the epidemic; in response to the outbreak in Xinfadi of Beijing in June 2020, the team led PUMCH staff to build a makeshift sampling site for nucleic acid tests within 70 hours and a nucleic acid testing lab within 58 hours, successfully building a defense against the epidemic.

From Wuhan to Harbin, to Beijing, and then to Urumqi, the team members have always been in the forefront of the fight against the epidemic. For their outstanding contributions in that regard, many team members were awarded the honorary title of “National Outstanding Individual in the Fight against the Epidemic”, PUMCH the “National Outstanding Team in the Fight against the Epidemic”, and the PUMCH party committee the “National Outstanding Grassroots Party Organization”.

During the 13th Five-Year Plan period, the team, with the support of the leadership of health authorities and in full cooperation with colleagues nationwide, made active efforts to achieve many breakthroughs from scratch in the definition, diagnosis and treatment, research and insurance of rare diseases in China: five ministries jointly released the first national list of 121 rare diseases, marking the first national-level recognition of rare diseases in China; the Rare Disease Diagnosis and Treatment Guideline (2019), which PUMCH was entrusted to compile, has become accessible for the whole country after its release led by the National Health Commission; PUMCH took the lead in building a collaborative network for rare disease diagnosis and treatment that covers 324 hospitals nationwide and carried out direct reporting of national rare disease running medical records; PUMCH took charge of the establishment of the National Rare Disease Registry System (NRDRS), which is among the top three international rare disease registry platforms; PUMCH also prepared for the establishment of the national rare disease medical quality control center and facilitates the building of a national rare disease quality control system; the hospital regularly conducts weekly multidisciplinary team (MDT) consultations for rare diseases, remotely sharing and working with over 50 hospitals in the collaborative network in China; PUMCH also compiled the first textbook on rare diseases, “Textbook on Rare Diseases”, and offered the first course on rare diseases for graduate students, founded the journal “Rare Diseases Research” and conducted various forms of online and offline training related to rare disease diagnosis and treatment to help cultivate talents in the field, reaching tens of thousands of people.

The team initiated the establishment of the China Alliance for Rare Diseases, stay in close contact with patients with rare diseases, and have conducted rare disease publicity, education and charity clinics for many years. With the support of many ministries and administrative competent authorities, the team has enabled the legal special purchase of foreign drugs for rare diseases and the first special purchase of mitotane tablets for adrenal cortical cancer; carried out the first compassionate use of drugs for rare diseases (foreign drugs in clinical trial) in China; organized many national studies on rare disease patients, medical personnel and drug accessibility to inform decision-making of relevant departments.

Committed to tapping into the advantages of the multidisciplinary treatment (MDT) model that PUMCH has built over the past 100 years, the team has led the establishment of a number of excellent multidisciplinary consultation teams. The one that stands out is the multidisciplinary consultation team for complicated and difficult pancreatic diseases, which is led by Academician Zhao Yupei and composed of members from more than 10 clinical and medical technology departments including the Department of General Surgery and Department of Gastroenterology, who together provide “one-stop” services for patients, shifting from the “doctor-centered” to “patient-centered” scenario.

The multidisciplinary diagnosis and treatment model has helped patients with complicated and difficult diseases deal with many deep-rooted problems, which are difficult access, lengthy treatment and high medical expenses. The team taps into the PUMCH expertise and wisdom to solve urgent and serious issues close to people’s heart.

Awarding the honorary title “National Outstanding Team of Professional Technical Talents” to PUMCH is a recognition of the hospital’s talents and what they have accomplished and also sets a higher bar for its discipline building and development. Motivated, the hospital will vigorously strive for higher-quality development, which starts with building a stronger pool of talents.

Group picture of representatives of the multidisciplinary team for complicated and difficult diseases and rare diseases

Text: Chen Xiao and the Department of Medical Affairs

Photo: Wang Pengfei

Translator: Liu Haiyan

Editor: Wang Yao