On the occasion of the 2017 International Rare Disease Day, with the support of the Shanghai Soong Ching Ling Foundation, the first rare disease monograph in China, which is based on clinical examples, was published on February 25. Its publication will serve as a reference for the majority of medical, scientific research workers, rare patients and related personnel.
The reporter was informed on the same day that the monograph was based on the Shanghai Children's Medical Center affiliated to Shanghai Jiao Tong University School of Medicine, and was completed by the Shanghai Rare Disease Prevention and Control Foundation's 112 experts in various fields within the United Nations. "Treatment of rare diseases" is divided into two parts, including 117 kinds of rare diseases that can be clearly diagnosed and treated, including endocrine and metabolism, blood, respiratory, immune, kidney and rheumatism, cardiovascular and other majors. .
With the development of social economy and medical technology, the country has listed the diagnosis and treatment of rare diseases as one of the key developments. Since the establishment of the Shanghai Rare Diseases Center in Shanghai in 2015, more than 1,500 patients have been diagnosed and treated, and nearly 400 rare cases have been diagnosed. More than 30 rare diseases have been reported in China. This year, Shanghai Children's Medical Center was approved as the National Children's Medical Center, which will connect with the national strategy and focus on the diagnosis and treatment of major and rare diseases.
"It is precisely because China has a large population base, a large number of patients with rare diseases, and difficulty in diagnosis and treatment. It is particularly urgent to improve the overall level of diagnosis and treatment of rare diseases and clinical research." Jiang Zhongyi, honorary editor of the book and dean of Shanghai Children's Medical Center, said that According to statistics from the National Institutes of Health (NIH), there are nearly 7,000 rare diseases recognized internationally, accounting for about 10% of human diseases. Only less than 1% of rare diseases have effective treatments, causing patients' families. Great pain.
"Today's first book "Therapeutic Rare Diseases" has collected 117 kinds of rare diseases that can be diagnosed and treated. The first part is the list of major rare diseases in Shanghai released by the Shanghai Municipal Health and Family Planning Commission last year. The 56 diseases included, the next section are 61 rare diseases that can be clearly diagnosed and have feasible treatment plans, breaking the 1% limit. This also indicates that with the continuous development of medical technology, there will be more Rare diseases have been overcome one by one." Jiang Zhongyi said.
Jiang Zhongyi further said that from the professional field, the vast majority of the rare cases in the book are long-term clinical experience of Chinese rare diseases, presented in the form of typical cases, using the most advanced molecular genetics technology in the world, according to The American Society of Medical Genetics and Genomics (ACMG) standard interprets genetic results, making it easier for clinical staff to have a deeper understanding of the disease.
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