goglcount.blogg.se - Depersonalization cure stories

There were a few blogs and maybe one or two forums that were centered around this topic, but that was it.

When I was going through it several years ago, there was no concrete information available on the internet. It can be difficult to work your way out of depersonalization and derealization (DP/DR) without proper guidance. Health Literacy Online: A Guide for Simplifying the User Experience.These are the various factors and strategies that helped me get myself out of the depersonalization/derealization hole. Department of Health and Human Services, Office of Disease Prevention and Health Promotion. Washington, DC: The National Academies Press. National Academies of Sciences, Engineering, and Medicine. Improving newborn screening laboratory test ordering and result reporting using health information exchange.

Reference: Data from the Newborn Screening Coding and Terminology Guide is available here.

Reference: MedGen Data Downloads and FTPĭata from the National Library of Medicine's Newborn Screening Coding and Terminology Guide is used to note if a disease is included on Federal or State recommendations for newborn screening testing.

Kohler S, Gargano M, Matentzoglu N, et al., The Human Phenotype Ontology in 2021, Nucleic Acids Research, Volume 49, Issue D1, 8 January 2021, Pages D1207–D1217.ĭata from the National Center for Biotechnology Information's MedGen is used to provide genetic testing information available for a disease. 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: