Hematological rare diseases
Conditions
Interventions
Grouping based on rare disease types:None
Sponsors
West China Hospital, Sichuan University
Eligibility
Sex/Gender
All
Age
No minimum to 100 Years
Inclusion criteria
Inclusion criteria: This study included patients who had been hospitalized in West China Hospital of Sichuan University between January 2011 and July 2024 and were eventually diagnosed with rare diseases of the blood system. Rare diseases of the blood system are defined as rare diseases in which the blood system is the source or the blood system is the most severe manifestation. Rare disease types with reference to the People's Republic of China, the first and the second batch of rare diseases directory is a rare disease of the blood, namely the following 25 kinds of disease: Castleman disease, congenital pure red cell aplastic anemia, Erdheim-Chester disease, Fanconi anemia, hemophilia, Langerhans histiocytosis, paroxysmal sleep hemoglobinuria, POEMS syndrome, primary light chain amyloidosis, sickle cell anemia, eczema thrombocytopenia with immune deficiency ), X - chain of lymphoid hyperplasia, acquired hemophilia, condensing set disease, congenital coagulation factor VII deficiency, skin T cell lymphoma, familial white blood cells of lymphoid tissue hyperplasia, platelet weakness syndrome, polycythemia vera, and idiopathic myelofibrosis, systemic mastocytosis, Mediterranean anemia (heavy), thrombotic thrombocytopenic Purpura, von Willebrand disease type III, Warburg's macroglobulinemia/lymphoplasmacytic lymphoma. Diagnostic information will be obtained from the hospital's reliable electronic medical record system, including up to 20 cases per rare disease and up to 500 cases overall (25 diseases, up to 20 cases each).
Exclusion criteria
Exclusion criteria: 1) The diagnostic conditions cannot meet the hard diagnostic criteria for the rare disease, but they are still diagnosed as clinically diagnosed patients with the rare disease. 2) can't get complete hospital records and discharged record information.
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| Diagnostic accuracy of admission records;Diagnostic accuracy of discharge records; | — |
Secondary
| Measure | Time frame |
|---|---|
| Diagnostic accuracy(Different admission and discharge departments); | — |
Countries
China
Contacts
Public ContactWu Yu; Yu Hongbin
West China Hospital, Sichuan University
Outcome results
None listed