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Health security for rare diseases has aroused much attention in the society nowadays, In this article, we analyzed in-depth the construction of rare diseases health security in China by studying the literature reviews, expert interviews, and reports of pilot policy investigations. We conclude in the study that it is an important step to constructing a multiple health security system for the rare disease making the basic health security as the cornerstone. For rare medications and treatments that cannot be covered by the current national health insurance, it is necessary to build an specific funding for rare disease funding as a means of safeguard. Finally, for those who are financially disadvantages, the system should involve relief and philanthropy to help them. By constructing a multiple health security system, rare diseases patients in our country will get a well-covered health care.
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The National Health Commission of the People′s Republic of China and six other departments jointly released the Second Catalog of Rare Diseases, which expanded the definition of rare diseases in China. The expansion of the catalog means greater attention to rare diseases at the national level, and is also expected to accelerate the launch of relevant rare disease drugs and benefit more rare disease patients. When the new rare disease catalog released, it is necessary to quickly sort out the availability of drugs and find out the base number for the advancement of subsequent relevant measures. This paper searched official medical information websites and medical databases such as the National Medical Products Administration (NMPA), the Center for Drug Evaluation (CDE), and foreign drug regulatory agencies, and sorted out and summarized the subject categories of diseases included in the Second Catalog of Rare Diseases, the corresponding global research and development and implementation of drugs, as well as the medical insurance access situation in China, elaborates on the differences in the accessibility of orphan drugs at home and abroad. As China′s prevention, treatment and protection of rare diseases has reached a new point, plans and prospects are made for the introduction of relevant policies in the future, as well as the promotion of research and development and protection and other key tasks.
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Objective To evaluate the effect of dexmedetomidine on brain injury in the patients undergoing cardiac surgery with cardiopulmonary bypass (CPB).Methods Eighty patients of both sexes, aged 18-64 yr, with body surface area of 1.6-2.0 m2, with left ventricular ejection fraction＞30％, of American Society of Anesthesiologists physical status Ⅱ or Ⅲ (New York Heart Association Ⅱ or Ⅲ), scheduled for elective cardiac surgery with CPB, were equally and randomly divided into control group (group C) and dexmedetomidine group (group D) using a random number table.Before induction of anesthesia, dexmedetomidine was given as a bolus of 1 μg/kg over 10 min followed by an infusion of 0.5 μg · kg-1 · h-1 throughout the surgery in group D, and the equal volume of normal saline was given in group C.After induction and before skin incision (T0) , at 30 min after beginning of CBP (T1) , at 30 min after the end of CBP (T2) , at the end of surgery (T3) , and at 24 and 72 h after surgery (T4.5) , blood samples from jugular bulb were drawn for determination of serum concentrations of tumor necrosis factor-alpha (TNF-α), interleukin-6 (IL-6), IL-10, S-100β protein and neuron-specific enolase (NSE).Results Compared with group C, the serum concentrations of TNF-α and S100β at T1-3 and IL-6 and NSE at T1.4 were significantly decreased, and the serum concentrations of IL-10 at T1-4 were increased in group D (P＜0.05).Conclusion Dexmedetomidine given as a bolus of 1 μg/kg over 10 min followed by an infusion of 0.5 μg · kg-1 · h-1 throughout the surgery can reduce the brain injury in the patients undergoing cardiac surgery with CPB, and the mechanism is related to inhibited inflammatory responses.
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Objective To investigate the effects of autologous blood withdrawal-reinfusion on the perioperative coagulation function in patients undergoing cardiac surgery with cardiopulmonary bypass (CPB ) . Methods Eighty-four ASA physical status Ⅱ-Ⅳ patients ,without impairment of coagulation function ,scheduled for cardiac surgery with CPB ,were equally and randomly divided into 2 groups using a random number table :autologous blood withdrawal-reinfusion group (group ABWR , n= 44 ) and control group (group C , n= 40 ) . Decreased coagulation function was diagnosed based on the following two criteria :laboratory standard of decreased coagulation function and clinical signs .After anesthesia and before the beginning of operation (T1 ) ,at 5 min after heparin was reversed with protamine (T2 ) ,at the end of operation (T3 ) and at 24 h after the end of operation (T4 ) ,venous blood samples were obtained to measure the blood routine and parameters of coagulation function . Blood routine included the red blood cell (RBC ) , hemoglobin (Hb ) , hematocrit (Hct ) , platelet count , and plasma fibrinogen concentration (Fib) .The parameters of coagulation function included thrombelastography (TEG) variables and prothrombin time (PT ) ,activated partial thromboplastin time (APTT ) ,international normalized ratio (INR ) , and activated clotting time (ACT ) . The volume of intraoperative blood loss , amount of mediastinal drainage at 6 and 24 h after operation , consumption of tranexamic acid and heparin during operation , and consumption of fibrinogen after operation ,and requirement for transfusion of allogeneic RBCs ,fresh frozen plasma (FFP) and platelet during operation and within 24 h after operation were recorded .The development of decreased coagulation function during operation and within 24 h after operation .Results Compared with group C , perioperative consumption of allogeneic RBCs were decreased ,reaction time (R) measured by celite-activated TEG was increased at T3 (P 0.05 ) . Conclusion Autologous blood withdrawal-reinfusion provides similar effects on coagulation function with allogeneic blood transfusion ,and does not increase the development of decreased coagulation function in patients undergoing cardiac surgery with CPB .
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Objective To investigate the clinical significance of soluble intercellular adhesion molecule-1 (sICAM-1) and interleukin-1β(IL-1β) in pregnant women with chorioamnionitis. Methods The levels of sICAM-1, IL-1β,CRP and WBC were detected by enzyme linked immunosorbent assay in maternal serum of 56 pregnant women with PPROM and 38 pregnant women with PROM. Every embryolemma was histopathologically confirmed after deliver-y. Results Chorioamnionitis in PPROM was more than that in PROM of full term(P<0.05). The serum levels of sI-CAM-1, IL-1β, CRP and WBC in chorioamnionitis in pregnant women were higher than those in non-chorioamnionitis (P <0.05). The serum levels of sICAM-1 was more sensitive and specific than those of CRP and WBC. The serum levels of IL-1β was more sensitive than those of CRP and WBC, but their specificity was similar. Conclusion The levels of sICAM-1 and IL-1β in maternal serum are good clinical biological markers for predicting chorioamnionitis in pregnant women.
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OBJECTIVE To analyze the risk factors and the drug-resistance of nosocomial acquired lung infection by Chryseobacterium meningosepticum.METHODS A retrospective investigation of the clinical correlative data and the drug sensitivity results of 60 cases with nosocomial acquired lung infection by C.meningosepticum from Jan 2004 to Jan 2006 was conducted in local hospital.RESULTS The patients were mainly distributed at ICU,respiration and neurosurgery wards.They had severe underlying diseases(100.0%),tracheal intubation(56.7%),central venous catheter(25.0%) and urine catheter(16.7%) treatments and applications of more than three antibiotics(68.3%).The drug-resistance of C.meningosepticum was serious.The antibiotic drugs which had higher susceptibility ratio were cefoperazone/sulbactam,fluoroquinolones,et al.CONCLUSIONS The main risk factors of nosocomial acquired lung infection by C.meningosepticum are severe underlying diseases,various invasive treatments,long-term hospitalization and inappropriate use of broad spectrum antibiotics.Clinical isolates are multi-drug resistant to many kinds of antibiotics.
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OBJECTIVE To investigate the profile of pathogen of infection in kidney disease patients. METHODS Pathogen of infection in kidney disease patients in our hospital from Jan 2004 to Feb 2006 was retrospectively investigated. RESULTS A total of 240 pathogen strains were isolated from 223 cases.Of the 240 isolated strains the rate of strains of Gram-negative bacilli was 55.4%,that of the Gram-positive cocci was 26.3%,the rate of fungi was 10.0% and that of the Gram-positive bacilli was 8.3%.The positive rate of Escherichia coli was the highest followed by Haemophilus influenzae.54.2% Of isolates were from urine,21.3% from sputum.The isolated pathogens resisted at different degrees to antibiotics which were used frequently in clinic.The rate of polyinfection was not high. CONCLUSIONS Pathogen of infection in kidney disease patients is mainly Enterobacteriaceae.The isolates mainly are E.coli which is multi-resistant.It mainly causes the urinary infections.