The creation and progress of the J Project in Eastern and Central Europe
Primary immunodeficiencies (PIDs) have now become recognized as a worldwide health problem. Rapid development of immunological and genetic technologies has led to the discovery of more than 200 PIDs and more than 150 disease‐related genes. Progress in the field is expected to take a new turn after t...
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Veröffentlicht in: | Annals of the New York Academy of Sciences 2011-11, Vol.1238 (1), p.65-73 |
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description | Primary immunodeficiencies (PIDs) have now become recognized as a worldwide health problem. Rapid development of immunological and genetic technologies has led to the discovery of more than 200 PIDs and more than 150 disease‐related genes. Progress in the field is expected to take a new turn after the introduction of new‐generation sequencing technologies that will enable searches for currently unknown PID‐related genes. By contrast, even with progress in molecular genetics, many patients remain ill and die early because of the lack of diagnostic or treatment facilities, or both. Thus, the gap between the knowledge accumulated and the appropriate management of patients with PIDs in everyday clinical practice has widened, necessitating PID awareness, particularly in countries with poor socioeconomic conditions. The J Project, established as a physician education and research collaboration program in Eastern and Central Europe, demonstrates how professional responsibility and long‐term joint efforts can make a beneficial difference for patients with inborn errors of immunity. |
doi_str_mv | 10.1111/j.1749-6632.2011.06247.x |
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Rapid development of immunological and genetic technologies has led to the discovery of more than 200 PIDs and more than 150 disease‐related genes. Progress in the field is expected to take a new turn after the introduction of new‐generation sequencing technologies that will enable searches for currently unknown PID‐related genes. By contrast, even with progress in molecular genetics, many patients remain ill and die early because of the lack of diagnostic or treatment facilities, or both. Thus, the gap between the knowledge accumulated and the appropriate management of patients with PIDs in everyday clinical practice has widened, necessitating PID awareness, particularly in countries with poor socioeconomic conditions. 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Rapid development of immunological and genetic technologies has led to the discovery of more than 200 PIDs and more than 150 disease‐related genes. Progress in the field is expected to take a new turn after the introduction of new‐generation sequencing technologies that will enable searches for currently unknown PID‐related genes. By contrast, even with progress in molecular genetics, many patients remain ill and die early because of the lack of diagnostic or treatment facilities, or both. Thus, the gap between the knowledge accumulated and the appropriate management of patients with PIDs in everyday clinical practice has widened, necessitating PID awareness, particularly in countries with poor socioeconomic conditions. The J Project, established as a physician education and research collaboration program in Eastern and Central Europe, demonstrates how professional responsibility and long‐term joint efforts can make a beneficial difference for patients with inborn errors of immunity.</description><subject>Central Europe</subject><subject>Diagnostic systems</subject><subject>Disease Management</subject><subject>Education</subject><subject>Education, Medical, Continuing</subject><subject>Europe</subject><subject>Genes</subject><subject>genetic technologies</subject><subject>Genetic Testing</subject><subject>Genetics</subject><subject>Health Services Research - methods</subject><subject>Humans</subject><subject>Immunologic Deficiency Syndromes - diagnosis</subject><subject>Immunologic Deficiency Syndromes - genetics</subject><subject>Interprofessional Relations</subject><subject>network</subject><subject>Patients</subject><subject>primary immunodeficiency</subject><subject>Proportional integral derivative</subject><subject>Recognition</subject><subject>socioeconomic conditions</subject><issn>0077-8923</issn><issn>1749-6632</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2011</creationdate><recordtype>article</recordtype><sourceid>EIF</sourceid><recordid>eNqNkU-L1DAYh4Mo7rj6FSTgQS-t-dPkTS_CMow7yjIKroh7CWmSamunnU1anP32pnadgwcxlwTe532SvD-EMCU5Tet1m1MoykxKznJGKM2JZAXkxwdodSo8RCtCADJVMn6GnsTYEkKZKuAxOmOMspKIYoW21989tsGbsRl6bHqHD2H4FnyMeKjxmIrv8ccwtN6OuOnxxsTRhwVc-34MpsObKQwH_xQ9qk0X_bP7_Rx9fru5Xm-zqw-X79YXV5kVvICMWmaMqCugtauclYQ7x5QCV9WMKFspY2QlKRdOFFYIR6SqClmVwEUJUgh-jl4u3vTO28nHUe-baH3Xmd4PU9QlFVxRRSGRr_5JUkKJglJAmdAXf6HtMIU-_UNTkACCMi4TpRbKhiHG4Gt9CM3ehLuk0nMuutXz-PU8fj3non_noo-p9fn9BVO19-7U-CeIBLxZgJ9N5-_-W6x3Xy8-zcckyBZBkxI6ngQm_NASOAj9ZXeptzdkeyN3Uiv-C3WmqHU</recordid><startdate>201111</startdate><enddate>201111</enddate><creator>Marodi, László</creator><general>Blackwell Publishing Inc</general><general>Wiley Subscription Services, Inc</general><scope>BSCLL</scope><scope>CGR</scope><scope>CUY</scope><scope>CVF</scope><scope>ECM</scope><scope>EIF</scope><scope>NPM</scope><scope>AAYXX</scope><scope>CITATION</scope><scope>7QG</scope><scope>7QL</scope><scope>7QP</scope><scope>7QR</scope><scope>7ST</scope><scope>7T5</scope><scope>7T7</scope><scope>7TK</scope><scope>7TM</scope><scope>7TO</scope><scope>7U7</scope><scope>7U9</scope><scope>8FD</scope><scope>C1K</scope><scope>FR3</scope><scope>H94</scope><scope>K9.</scope><scope>M7N</scope><scope>P64</scope><scope>RC3</scope><scope>SOI</scope><scope>7SP</scope><scope>7U5</scope><scope>L7M</scope><scope>7X8</scope></search><sort><creationdate>201111</creationdate><title>The creation and progress of the J Project in Eastern and Central Europe</title><author>Marodi, László</author></sort><facets><frbrtype>5</frbrtype><frbrgroupid>cdi_FETCH-LOGICAL-c5347-1c2aa5fb71fdbdc603dd2887dbf208cb8aa6b6135d54c55d068b46b9735976553</frbrgroupid><rsrctype>articles</rsrctype><prefilter>articles</prefilter><language>eng</language><creationdate>2011</creationdate><topic>Central Europe</topic><topic>Diagnostic systems</topic><topic>Disease Management</topic><topic>Education</topic><topic>Education, Medical, Continuing</topic><topic>Europe</topic><topic>Genes</topic><topic>genetic technologies</topic><topic>Genetic Testing</topic><topic>Genetics</topic><topic>Health Services Research - 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Academic</collection><jtitle>Annals of the New York Academy of Sciences</jtitle></facets><delivery><delcategory>Remote Search Resource</delcategory><fulltext>fulltext</fulltext></delivery><addata><au>Marodi, László</au><aucorp>J Project Study Group</aucorp><aucorp>the J Project Study Group</aucorp><format>journal</format><genre>article</genre><ristype>JOUR</ristype><atitle>The creation and progress of the J Project in Eastern and Central Europe</atitle><jtitle>Annals of the New York Academy of Sciences</jtitle><addtitle>Ann N Y Acad Sci</addtitle><date>2011-11</date><risdate>2011</risdate><volume>1238</volume><issue>1</issue><spage>65</spage><epage>73</epage><pages>65-73</pages><issn>0077-8923</issn><eissn>1749-6632</eissn><coden>ANYAA9</coden><abstract>Primary immunodeficiencies (PIDs) have now become recognized as a worldwide health problem. Rapid development of immunological and genetic technologies has led to the discovery of more than 200 PIDs and more than 150 disease‐related genes. Progress in the field is expected to take a new turn after the introduction of new‐generation sequencing technologies that will enable searches for currently unknown PID‐related genes. By contrast, even with progress in molecular genetics, many patients remain ill and die early because of the lack of diagnostic or treatment facilities, or both. Thus, the gap between the knowledge accumulated and the appropriate management of patients with PIDs in everyday clinical practice has widened, necessitating PID awareness, particularly in countries with poor socioeconomic conditions. The J Project, established as a physician education and research collaboration program in Eastern and Central Europe, demonstrates how professional responsibility and long‐term joint efforts can make a beneficial difference for patients with inborn errors of immunity.</abstract><cop>Malden, USA</cop><pub>Blackwell Publishing Inc</pub><pmid>22129054</pmid><doi>10.1111/j.1749-6632.2011.06247.x</doi><tpages>9</tpages></addata></record> |
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subjects | Central Europe Diagnostic systems Disease Management Education Education, Medical, Continuing Europe Genes genetic technologies Genetic Testing Genetics Health Services Research - methods Humans Immunologic Deficiency Syndromes - diagnosis Immunologic Deficiency Syndromes - genetics Interprofessional Relations network Patients primary immunodeficiency Proportional integral derivative Recognition socioeconomic conditions |
title | The creation and progress of the J Project in Eastern and Central Europe |
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