![]() Orphanet is an online database of rare diseases and orphan drugs. Reference: Access aggregated data from Orphanet at Orphadata. ![]() ![]() Reference: UMLS Vocabulary Standards and Mappings Downloadsĭata from Orphanet and Human Phenotype Ontology (HPO) are used to provide information on a disease's symptoms, genes, inheritance, population estimates, and more.The National Library of Medicine's Unified Medical Language System (UMLS) is used to classify and organize diseases and disease categories. This may include a list recently published research papers a summary of the findings items from the popular press and information about funded researchers, members of their scientific advisory board, or the pharmaceutical industry. Many organizations have a section of their website devoted to research news and updates. Patient and rare disease organizations may list summaries of research efforts supported by the organization or relevant to their disease(s). Results entered in the database can be found in the Study Results tab of the study. This is normally completed within one year of completion of the study. The most promising treatments will progress to Phase 3 studies.Ĭ requires the results of certain types of studies to be entered into the Results Database. Periodically checking in for clinical studies testing new treatments provides a way to stay informed about new therapies that may be available in the future. Results from completed studies may take several years to publish. To find results from a specific research study, use the lead researcher’s name and key words from the study as search terms. To find published results, try searching PubMed using the name of the rare disease. PubMed is a database of published research articles. The following resources can be used to stay informed about new treatments and research results related to a rare disease:
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