This website includes various research tools and presents social, ethical and legal aspects of human genetics. Issues such as confidentiality of genetic data, consent to genetic testing, and stem cell research are explored. Contains a searchable database of Laws and Policies from 1999 -present called GenBiblio.
The Biobank TOOLKIT provides a one-stop location for access to biobanking tools.
Tools are searchable by:
This website presents the last version of the ICD-10, a detailed description of known diseases and injuries. Every disease (or group of related diseases) is described together with its diagnosis and its unique code. A World Health Organization classification.
This website details a standardized system for classifying of health and health related domains that describe body functions and structures, activities and participation. The domains are classified from body, individual and societal perspectives. Since an individual's functioning and disability occurs in a context, ICF also includes a list of environmental factors. ICF is a new member of WHO Family of International Classifications.
The Office for Human Research Protections and the U.S. Department of Health and Human Services have created the International Compilation of Human Research Standards enumerates over 1,000 laws, regulations, and guidelines that govern human subjects research in 113 countries, as well as the standards from a number of international and regional organizations. This Compilation was developed for use by researchers, IRBs/Research Ethics Committees, sponsors, and others who are involved in human subjects research around the world. (2015)
This website presents the classification structure for organizing jobs into a defined set of groups according to the tasks and duties undertaken in the job. Developed by the International Labour Organization.
This website provides information about, and access to software for, applications in Bayesian and computational statistics particularly in population genetics. This includes association analyses for genome scans and candidate genes (see BIMBAM), estimating haplotypes from population genotype data (see PHASE) and developing statistical models for patterns of linkage disequilibrium across multiple loci, and using these patterns to identify recombination hotspots. A University of Chicago-maintained website.
Mica is a Content Management Software (CMS) application used to create web portals for epidemiological study consortia. Using Mica, consortia can build personalised web sites for publishing their research activities and their membership. Mica includes many domain-specific features such as study catalogues, data dictionary browsers, on-line data access request forms, community tools (forums, events, news) and others. Moreover, Mica includes a powerful data search engine that allows authenticated researchers to perform distributed queries on the content of each individual study data collection hosted by the OBiBa Opal database software. Led by the OBiBa software project.
This 2007 (updated in 2011) document outlines the operational, technical, ethical, legal, and policy best practices for NCI-supported biospecimen resources. Co-written by NCI, National Institute of Health, and US Department of Health and Human Services-co-written document (2007). The document was updated through expert and public consultation in 2011.
This website provides a complete listing of all the categories under which Canadian jobs are classified and their description. A Statistics Canada-maintained website.
The aim of this paper is to provide information relevant for the establishment, management and governance of biobanks in Australia. National and international documentation, as well as other relevant case studies are used to identify best practices with regard to standardization of biobank policies, practices and procedures. Prepared by the National Health and Medical Research Council (2010) (Australia).
Onyx is a comprehensive software application used to manage participant interviews and to collect data in biobank assessment centres. Onyx controls both the order and availability of the interview stages (for example, no stages are available prior to the informed consent is signed) and captures many administrative parameters such as the starting and ending times of each stage. Onyx also manages a participant appointment list and reception of participants, as well as data filtering and encryption prior to export to a central study database (see Opal). Led by the OBiBa software project.
The Opal application integrates biobank data from different sources into a secure central data repository. It provides interfaces for managing and querying a data element dictionary and for generating administrative and scientific reports, and supports many other activities required to analyze the data collected from subjects. Led by the OBiBa software project.