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10.1016/j.atg.2014.04.003 http://scihub22266oqcxt.onion/10.1016/j.atg.2014.04.003 C4882025!4882025 !27275410     free     free     free Warning: file_get_contents(https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pubmed&id=27275410 &cmd=llinks): Failed to open stream: HTTP request failed! HTTP/1.1 429 Too Many Requests in C:\Inetpub\vhosts\kidney.de\httpdocs\pget.php on line 215 Warning: imagejpeg(C:\Inetpub\vhosts\kidney.de\httpdocs\phplern\27275410 .jpg): Failed to open stream: No such file or directory in C:\Inetpub\vhosts\kidney.de\httpdocs\pget.php on line 117       Appl+Transl+Genom 2014 ; 3 (2 ): 23-9 Nephropedia Template TP {{tp|p=27275410 |t=2014. Rare disease research: Breaking the privacy barrier |pdf=|usr=}}{{27275410 }} gab.com Text Rare disease research: Breaking the privacy barrier JO: Appl Transl Genom http://www.kidney.de/pget.php?&tw=1&pmid=27275410 #FOAvip Due to the few patients affected, rare disease research has to count on international registries to exist in order to produce significant research outputs. Data sharing of registries is therefore a unique resource to allow rare disease research to flourish and any lost data will jeopardize the quality of an already extremely difficult research. The rules usually applied to research such as the right to withdraw or the need for specific consent for every use of data can be detrimental in order to get effective results. Privacy rights regulated through traditional informed consent mechanisms have been regarded as a major barrier in order to effectively share data worldwide. Some authors argue that this barrier hampers results that could be beneficial to the patients so that another right will be overstated: the right to quality healthcare. We argue in this paper that privacy has been often interpreted just one-sided as the right to secrecy but it can entail another meaning: the right to manage one's own private sphere. Managing it pertains, not only to the right to deny access, but also to the right to grant access. At the same time research on patient participation and transparency shows that new forms of IT-based informed consent can provide a good balance between the right of individuals to be in control of their data and the opportunity for science to pursue international research. Twit Text FOAVip Rare disease research: Breaking the privacy barrier ????Appl Transl Genom http://www.kidney.de/pget.php?&tw=1&pmid=27275410 #FOAvip Twit Text # Free Paper on # # # # # LINK http://www.kidney.de/pget.php?&tw=1&pmid=27275410 #FOAvip English Wikipedia <ref>{{Cite pmid|27275410 }}</ref> Rare disease research: Breaking the privacy barrier #MMPMID27275410 Mascalzoni D ; Paradiso A ; Hansson M Appl Transl Genom 2014[Jun]; 3 (2 ): 23-9 PMID27275410 show ga Due to the few patients affected, rare disease research has to count on international registries to exist in order to produce significant research outputs. Data sharing of registries is therefore a unique resource to allow rare disease research to flourish and any lost data will jeopardize the quality of an already extremely difficult research. The rules usually applied to research such as the right to withdraw or the need for specific consent for every use of data can be detrimental in order to get effective results. Privacy rights regulated through traditional informed consent mechanisms have been regarded as a major barrier in order to effectively share data worldwide. Some authors argue that this barrier hampers results that could be beneficial to the patients so that another right will be overstated: the right to quality healthcare. We argue in this paper that privacy has been often interpreted just one-sided as the right to secrecy but it can entail another meaning: the right to manage one's own private sphere. Managing it pertains, not only to the right to deny access, but also to the right to grant access. At the same time research on patient participation and transparency shows that new forms of IT-based informed consent can provide a good balance between the right of individuals to be in control of their data and the opportunity for science to pursue international research. äRare disease research: Breaking the privacy barrier (epmc).pdf DeepDyve Pubget Overpricing