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The First Affiliated Hospital of Xi’an Jiaotong University becomes a member of National Collaboration Network for Diagnosis and Treatment of Rare Diseases as the leading hospital of Shaanxi Province

Updated: Feb 20, 2019
From: Publicity Department
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On February 12, the National Health Commission issued the "Notification of Establishing National Collaboration Network for Diagnosis and Treatment of Rare Diseases". According to the formal procedures including recommendation by the provincial health departments, expert evaluation and preliminary selection by the National Health Commission, 324 hospitals with high diagnostic and treatment abilities for a large quantity of cases of rare diseases became the members of National Collaboration Network for Diagnosis and Treatment of Rare Diseases. As the leading hospital of Shaanxi Province, the First Affiliated Hospital of Xi 'an Jiaotong University along with other 6 hospitals in Shaanxi Province obtained the membership of this network.

The National Collaboration Network for Diagnosis and Treatment of Rare Diseases consists of 1 national leading hospital, 32 provincial leading hospitals and 291 members. Provincial health departments should strengthen the guidance and management of diagnosis and treatment of rare diseases in local hospitals. All members of the collaboration network should elevate the awareness of medical quality and safety, actively explore the application of multidisciplinary diagnosis and treatment (MDT) in rare diseases and carry out quality control of the diagnosis and treatment of rare diseases.

Besides, all members should promptly include rare disease medicines on the prescription medicine list and national essential medicine list, and implement clinical monitoring of medicines for rare disease. Extensive efforts should be delivered to strengthen the connection of medicine list for rare diseases and medicine dispensing among the membership hospitals and the extension of logistics chain, aiming to enable patients with rare diseases to pick up the medicines from the nearest hospital.

All membership hospitals should timely input the diagnostic and treatment information of patients with rare diseases into the registration system, gradually realizing the functions of acquisition of case information, remote consultation, online training and public propaganda and education within the collaboration network.

All members are encouraged to conduct clinical research and trial for rare diseases, promote scientific research projects for rare diseases, and accelerate the transformation of research results and the application of appropriate technologies into clinical practice.

Through nationwide screening and selection, 324 hospitals set up the National Collaboration Network for Diagnosis and Treatment of Rare Diseases to establish smooth and mature collaboration mechanism, deliver relatively centralized diagnosis and treatment and bilateral referral for patients with rare diseases, give full play to the influential role of high-quality medical resources and improve the comprehensive diagnosis and treatment capabilities of rare diseases, aiming to achieve the goal of early detection, early diagnosis, effective treatment and management of rare diseases in China.

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