On March 3, the Adult Spinal Muscular Atrophy (SMA) Diagnosis and Treatment Center in Northwest China led by the Department of Neurology, the First Affiliated Hospital of Xi’an Jiaotong University (XJTU) was established in our hospital. This ceremony was joined by Liu Qingguang, Vice President of our hospital, Qu Qiumin, Director of Department of Neurology, Li Hongxia, Deputy Head of Medical Department, Feng Weiyi, Head of Department of Pharmacy, Wang Xiaoli, Deputy Director of Medical Insurance Office, and medical representatives of Department of Neurology.
Director Qu Qiumin presided over the ceremony. He said that SMA was a rare disease, but its morbidity was actually not low and approximate to 1/6,000-10,000. Most of rare diseases are refractory and their diagnosis and treatment are challenged, so the patients are often misdiagnosed and delayed, and their conditions are delayed due to no appropriate diagnosis and treatment. As the inaugural construction unit of national medical centers, our hospital will pay more attention to the diagnosis and treatment of refractory and rare diseases. The establishment of this center is expected to promote more standardized and reasonable diagnosis and treatment of SMA in northwest China, so that the patients could be timely diagnosed and treated.
Vice President Liu Qingguang said the patients with rare diseases in China had reached 20 million persons, and the incidence every year was 200,000 patients. Caring about rare diseases is an embodiment of social progress, as he said. SMA involves all ages, and the patients will suffer a lot without timely diagnosis and treatment. It is of great significance to establish the Adult SMA Diagnosis and Treatment Center in Northwest China. It is expected this center will drive to fully improve the diagnosis, treatment and long-term disease management level of adult SMA, and provide intensive and early diagnosis and treatment to better provide high quality medical services for adult patients with SMA, from which experience will be cumulated and spread to different specialties and diseases, thus promoting the diagnosis, treatment and management of rare diseases in northwest region.
Vice President Liu Qingguang, Director Qu Qiumin and Deputy Head Li Hongxia jointly unveiled the plaque for the Adult SMA Diagnosis and Treatment Center in Northwest China.
In the academic lecture link after the ceremony, Professor Dang Jingxia from the Department of Neurology introduced the diagnosis of SMA, Professor Dai Yi from the Department of Neurology, Peking Union Medical College Hospital presented the treatment progress of SMA, and physician Qin Xing from the Department of Neurology gave a presentation on Spinraza treatment process for adult SMA in the First Affiliated Hospital of XJTU. The participants made energetic exchanges and discussions on relevant specialty-specific problems.
