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10.1186/s13023-021-01885-3 http://scihub22266oqcxt.onion/10.1186/s13023-021-01885-3 34107995!8188744!34107995     free     free     free Warning: file_get_contents(https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pubmed&id=34107995&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       Orphanet+J+Rare+Dis 2021 ; 16 (1): 263 Nephropedia Template TP {{tp|p=34107995|t=2021. Deliberate paradigm shift in research in rare neurodevelopmental disorders |pdf=|usr=}}{{34107995}} gab.com Text Deliberate paradigm shift in research in rare neurodevelopmental disorders JO: Orphanet J Rare Dis http://www.kidney.de/pget.php?&tw=1&pmid=34107995 #FOAvip Diagnosis and management of children with rare neurodevelopmental disorders (RNDDs) are complex. The COVID-19 pandemic has forced us to rethink the research activities critical to improve our understanding and treatment of RNDDs, such as creating large international registries and developing natural history studies. In this communication, we reflect on our latest effort in conducting research remotely while providing support, education and feedback to families affected by a specific RNDD. Specifically, we advocate for a deliberate paradigm shift towards virtual family meetings as ecological platforms to enroll and assess individuals with rare disorders. Herein, we demonstrate that such a shift is crucial to substantially increasing geographical and age range coverage, which are essential for capturing the phenotypic variations in RNDDs. Finally, we call on the community to invest in building integrated technological platforms necessary for effective remote research activities, through standardization, collaboration and training. Twit Text FOAVip Deliberate paradigm shift in research in rare neurodevelopmental disorders ????Orphanet J Rare Dis http://www.kidney.de/pget.php?&tw=1&pmid=34107995 #FOAvip Twit Text # Free Paper on # # # # # LINK http://www.kidney.de/pget.php?&tw=1&pmid=34107995 #FOAvip English Wikipedia <ref>{{Cite pmid|34107995}}</ref> Deliberate paradigm shift in research in rare neurodevelopmental disorders #MMPMID34107995 Bain JM; Ardalan A; Goldman S Orphanet J Rare Dis 2021[Jun]; 16 (1): 263 PMID34107995show ga Diagnosis and management of children with rare neurodevelopmental disorders (RNDDs) are complex. The COVID-19 pandemic has forced us to rethink the research activities critical to improve our understanding and treatment of RNDDs, such as creating large international registries and developing natural history studies. In this communication, we reflect on our latest effort in conducting research remotely while providing support, education and feedback to families affected by a specific RNDD. Specifically, we advocate for a deliberate paradigm shift towards virtual family meetings as ecological platforms to enroll and assess individuals with rare disorders. Herein, we demonstrate that such a shift is crucial to substantially increasing geographical and age range coverage, which are essential for capturing the phenotypic variations in RNDDs. Finally, we call on the community to invest in building integrated technological platforms necessary for effective remote research activities, through standardization, collaboration and training. |*COVID-19[MESH] |*Neurodevelopmental Disorders/diagnosis[MESH] |Child[MESH] |Heterogeneous-Nuclear Ribonucleoproteins[MESH] |Humans[MESH] |Pandemics[MESH]Deliberate paradigm shift in research in rare neurodevelopmental disor(epmc).pdf DeepDyve Pubget Overpricing