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The Shared Health Research Information Network (SHRINE): A Prototype Federated Query Tool for Clinical Data Repositories

G. M. Weber, S. N. Murphy, A. J. McMurry, D. MacFadden, D. J. Nigrin, S. Churchill, I. S. Kohane
2009 JAMIA Journal of the American Medical Informatics Association  
This will guide us in creating a future technical architecture that is scalable to a national level, compliant with ethical guidelines, and protective of the interests of the participating hospitals.  ...  A b s t r a c t The authors developed a prototype Shared Health Research Information Network (SHRINE) to identify the technical, regulatory, and political challenges of creating a federated query tool  ...  In 1994, a collaboration of  ... 
doi:10.1197/jamia.m3191 pmid:19567788 pmcid:PMC2744712 fatcat:r4pzgy5mwfafvcilwdhpdkx46i

SHRINE: Enabling Nationally Scalable Multi-Site Disease Studies

Andrew J. McMurry, Shawn N. Murphy, Douglas MacFadden, Griffin Weber, William W. Simons, John Orechia, Jonathan Bickel, Nich Wattanasin, Clint Gilbert, Philip Trevvett, Susanne Churchill, Isaac S. Kohane (+1 others)
2013 PLoS ONE  
We call this system the 'Shared Health Research Information Network', with the following properties: (1) reuse electronic health data from everyday clinical care for research purposes, (2) respect patient  ...  The wide range of study objectives and growing adoption suggest that SHRINE may be applicable beyond the research uses and participating hospitals named in this report.  ...  We would also like to thank our shrine national collaborators, with special thanks to Nick Anderson, Marc Natter, and Ken Mandl.  ... 
doi:10.1371/journal.pone.0055811 pmid:23533569 pmcid:PMC3591385 fatcat:qqil2bionnbctdvxlnhu22dlzq

Privacy-preserving data sharing infrastructures for medical research: systematization and comparison

Felix Nikolaus Wirth, Thierry Meurers, Marco Johns, Fabian Prasser
2021 BMC Medical Informatics and Decision Making  
The aim of the work described in this paper was to develop a systematization for the degree of privacy protection provided and the trade-offs taken by different data sharing methods.  ...  to different data analysis requirements, and (6) scalability, to maintain performance with increasing complexity of shared data or common analysis processes.  ...  SHRINE is for example used in a registry of pediatric patients with rheumatic disease [57] or in a network supporting clinical trial recruitment [58] .  ... 
doi:10.1186/s12911-021-01602-x fatcat:7xrq26aowvcsbfrkw2ot5u5ceu

An i2b2-based, generalizable, open source, self-scaling chronic disease registry

M. D. Natter, J. Quan, D. M. Ortiz, A. Bousvaros, N. T. Ilowite, C. J. Inman, K. Marsolo, A. J. McMurry, C. I. Sandborg, L. E. Schanberg, C. A. Wallace, R. W. Warren (+2 others)
2013 JAMIA Journal of the American Medical Informatics Association  
Integrating Biology & the Bedside (i2b2) data warehousing framework and the Shared Health Research Information Network (SHRINE) peer-to-peer networking software.  ...  Materials and methods Focusing our design around creation of a scalable solution for collaboration within multi-site disease registries, we leverage the i2b2 and SHRINE open source software to create a  ...  60 medical centers, encompassing health data on an estimated 45 million subjects worldwide, and which is readily scalable via SHRINE. 2 The i2b2-SSR system supports the following administrator actions  ... 
doi:10.1136/amiajnl-2012-001042 pmid:22733975 pmcid:PMC3555330 fatcat:dccqwuba6vcrzj5q7og6czg6u4

MedCo: Enabling Secure and Privacy-Preserving Exploration of Distributed Clinical and Genomic Data

Jean Louis Raisaro, Juan Troncoso-Pastoriza, Mickael Misbach, Joao Sa Sousa, Sylvain Pradervand, Edoardo Missiaglia, Olivier Michielin, Bryan Ford, Jean-Pierre Hubaux
2018 IEEE/ACM Transactions on Computational Biology & Bioinformatics  
Its performance is comparable to the ones of SHRINE (networked i2b2), which, in contrast, does not provide any data protection guarantee.  ...  We demonstrate MedCo's practicality by testing it on data from The Cancer Genome Atlas in a simulated network of three institutions.  ...  For example, SHRINE is used in several PCORNet clinical data research networks.  ... 
doi:10.1109/tcbb.2018.2854776 pmid:30010584 fatcat:b4fngns3i5eepjhernbtafvauy

Towards large-scale sharing of electronic health records of cancer patients

Praveen R. Rao, Stanley A. Edlavitch, Jeffrey L. Hackman, Timothy P. Hickman, Douglas S. McNair, Deepthi S. Rao
2010 Proceedings of the ACM international conference on Health informatics - IHI '10  
In this paper, we present an overview of the software framework called CDN (Collaborative Data Network) that we are developing for large-scale sharing of electronic health records (EHR).  ...  In this on-going effort, we focus on sharing EHRs of cancer patients. Cancer is the second leading cause of deaths in the US.  ...  Performance and scalability are important goals we aim to achieve in CDN.  ... 
doi:10.1145/1882992.1883081 dblp:conf/ihi/RaoEHHMR10 fatcat:sljz4mfqbjawbdtfw46bj54tde

A translational engine at the national scale: informatics for integrating biology and the bedside

Isaac S Kohane, Susanne E Churchill, Shawn N Murphy
2012 JAMIA Journal of the American Medical Informatics Association  
instrumentation for using the informational by-products of health care and the biological materials accumulated through the delivery of health care to conduct discovery research and to study the healthcare system in  ...  Other members of the i2b2 network (see figure 2 ) are now considering creating or joining regional or national SHRINE networks.  ...  Furthermore, of very important significance for the scalability of this approach, the reproducibility of the phenotypes from codified data and natural language processed terms was very high and over 90%  ... 
doi:10.1136/amiajnl-2011-000492 pmid:22081225 pmcid:PMC3277623 fatcat:qquqr3jnevh23owl4pudbwvyx4

Sharing Spaces and Entanglements With Big Cats: The Warli and Their Waghoba in Maharashtra, India

Ramya Nair, Dhee, Omkar Patil, Nikit Surve, Anish Andheria, John D. C. Linnell, Vidya Athreya
2021 Frontiers in Conservation Science  
We also learnt that the Warlis believe in a reciprocal relationship, where Waghoba will protect them from the negative impacts of sharing spaces with big cats if the people worship the deity and conduct  ...  Through our research, we found that the worship of Waghoba is highly prevalent, with 150 shrines dedicated to this deity across our study site.  ...  The GPS location of each shrine was recorded so as to map the geographical distribution of Waghoba shrines in the study area. All data points were added to a map using QGIS (see Figure 2 ).  ... 
doi:10.3389/fcosc.2021.683356 fatcat:d6hmadf7q5dr7oe3wz2wagyhom

A Model for the Electronic Support of Practice-Based Research Networks

K. A. Peterson, B. C. Delaney, T. N. Arvanitis, A. Taweel, E. A. Sandberg, S. Speedie, F. D. Richard Hobbs
2012 Annals of Family Medicine  
research networks (PBRNs).  ...  PURPOSE The principal goal of the electronic Primary Care Research Network (ePCRN) is to enable the development of an electronic infrastructure to support clinical research activities in primary care practice-based  ...  Although the introduction of electronic health records in primary care increases the potential for PBRNs to electronically involve practices in Kevin A. Peterson  ... 
doi:10.1370/afm.1434 pmid:23149534 pmcid:PMC3495931 fatcat:pyjy5wevnnhx5ldywgfpuql454

Accelerating Genomic Data Generation and Facilitating Genomic Data Access Using Decentralization, Privacy-Preserving Technologies and Equitable Compensation

Dennis Grishin, Kamal Obbad, Preston Estep, Kevin Quinn, Sarah Wait Zaranek, Alexander Wait Zaranek, Ward Vandewege, Tom Clegg, Nico César, Mirza Cifric, George Church
2018 Blockchain in Healthcare Today  
Acknowledgments The authors would like to thank Armon Rahim and Nathaniel Tucker for their help in reviewing this article.  ...  In brief, Since token holders are invested in the network, they are incentivized to maintain its proper operation that ensures data protection.  ...  Governance The Nebula blockchain can be used to enable Nebula network participants to collectively govern the network, in particular, to help maintain data protection.  ... 
doi:10.30953/bhty.v1.34 fatcat:bgjyvrf54vglljkwskkl5dvwfu

The Genomics Research and Innovation Network: creating an interoperable, federated, genomics learning system

Kenneth D. Mandl, the Genomics Research and Innovation Network, Tracy Glauser, Ian D. Krantz, Paul Avillach, Anna Bartels, Alan H. Beggs, Sawona Biswas, Florence T. Bourgeois, Jeremy Corsmo, Andrew Dauber, Batsal Devkota (+17 others)
2019 Genetics in Medicine  
The GRIN collaboration establishes the technology, policy, and procedures for a scalable genomic research network.  ...  We sought to establish globally scalable technology, policy, and procedures for sharing biosamples and associated genomic and phenotypic data on broadly consented cohorts, across sites of care.  ...  ACKNOWLEDGEMENTS We gratefully acknowledge financial support from Boston Children's Hospital, Children Publisher's note Springer Nature remains neutral with regard to jurisdictional claims in published  ... 
doi:10.1038/s41436-019-0646-3 pmid:31481752 pmcid:PMC7000325 fatcat:imjmvwpxkjgdrhd4g647qac27e

A Digital Architecture for a Network-Based Learning Health System – Integrating Chronic Care Management, Quality Improvement, and Research

Keith Marsolo, Peter A. Margolis, Christopher B. Forrest, Richard B. Colletti, John J. Hutton
2015 eGEMs  
This collaboration involved transitioning an existing registry to one that is linked to the electronic health record (EHR), enabling a "data in once" strategy.  ...  This collaboration involved transitioning an existing registry to one that is linked to the electronic health record (EHR), enabling a "data in once" strategy.  ...  Funding This work was supported through funding from the Agency for Healthcare Research and Quality (R01 HS020024 and R01 HS022974) and by the participating centers of the ImproveCareNow Network (  ... 
doi:10.13063/2327-9214.1168 pmid:26357665 pmcid:PMC4562738 fatcat:2s4r4w66afh5pajlcviv24tkpq

A software tool for large-scale sharing and querying of clinical documents modeled using HL7 version 3 standard

Praveen R. Rao, Tivakar Komara Swami, Deepthi S. Rao, Michael J. Barnes, Swati G. Thorve, Prasad Natoo
2012 Proceedings of the 2nd ACM SIGHIT symposium on International health informatics - IHI '12  
A location service in CDN discovers data of interest in the network at query time.  ...  CDN is unique in its design -it supports location oblivious queries in a large-scale, network wherein a user does not explicitly provide the location of the data for a query.  ...  in NLP for Clinical Data" organized by Dr.  ... 
doi:10.1145/2110363.2110417 dblp:conf/ihi/RaoSRBTN12 fatcat:nxkuw3gaofctngidztpghdfw7y

D8.2 Overview Document on Already Existing Data Harmonisation Tools

Sebastian Mate, Ines Leb, Christina Schüttler, Kaisa Silander, Timo Miettinen, Juha Knuuttila, Niina Eklund, Hans-Ulrich Prokosch
2016 Zenodo  
Since data harmonisation, however, is not only an important issue in biobanking, but a key component in all data sharing/data projects, our focus is also on such projects outside the biobanking area.  ...  In addition, it will include information on the different levels and versions of various standardised and non-standardised ontologies and data dictionaries and schemas.  ...  systems illustrate the success and the scalability of the i2b2/SHRINE approach (Kohane 2012) .  ... 
doi:10.5281/zenodo.165775 fatcat:gv3654h5ondpri6hbuo2hdppeq

Consent2Share: an integrated broad consenting process for re-contacting potential study subjects

R Peter Iafrate, Gloria P Lipori, Christopher A Harle, David R Nelson, Timothy J Barnash, Patricia T Leebove, Kathleen A Adams, Debbi Montgomery
2016 Journal of Clinical and Translational Research  
Results: Although the paper consenting method resulted in over an 80% "yes" rate of consent, it was complicated by significant procedural challenges which prevented scalability.  ...  All consent data are integrated to the EHR to facilitate linking to clinical information.  ...  Acknowledgements Research reported in this publication was supported in part by the National Center for Advancing Translational Sciences of the National Institutes of Health under University of Florida  ... 
pmid:30873469 pmcid:PMC6410634 fatcat:bgk5plsoivh25mkmtngbo6fshu
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