NDLI: Development and Support of Platforms for Research into Rare Diseases

Content Provider	IEEE Xplore Digital Library
Author	Sinnott, Richard O. Jiang, Jipu Stell, Anthony Watt, John
Copyright Year	2010
Abstract	The technologies and ideas that underlie e-Science in providing seamless access to distributed resources is a compelling one and has been applied in many research domains. The clinical domain is one area in particular that, in principle has much to be gained from e-Science approaches. Until now however it has largely been the case that the practical realization, support and adoption of e-Science solutions in a clinical setting have been fraught by many hurdles. Not least is trust of technologies and their use in the field as opposed to demonstrator projects with non-real clinical data to prove the merit of e-Science ideas and solutions. The National e-Science Centre (NeSC– www.nesc.ac.uk) at the University of Glasgow have had a large number of clinical projects that have moved from the proof of concept demonstrators through to real systems used by real clinical researchers in real clinical trials and studies. In this paper we focus on the software systems that have been developed to support two major international post-genomic clinical research projects in the area of rare diseases: the European Union 7th Framework (EuroDSD – www.eurodsd.eu) project and the European Science Foundation (ENSAT – www.ensat.org) project. We outline the software platforms that have been rolled out and identify how the e-Science vision of secure access to clinical resources has been realized and subsequently used.
Starting Page	745
Ending Page	750
File Size	480113
Page Count	6
File Format	PDF
ISBN	9781424469871
e-ISBN	9781424469888
DOI	10.1109/CCGRID.2010.127
Language	English
Publisher	Institute of Electrical and Electronics Engineers, Inc. (IEEE)
Publisher Date	2010-05-17
Publisher Place	Australia
Access Restriction	Subscribed
Rights Holder	Institute of Electrical and Electronics Engineers, Inc. (IEEE)
Subject Keyword	Diseases Tumors Software systems Middleware Clouds Grid computing Clinical trials Data security Pediatrics Endocrine system Adrenal Tumours Data-Grids Virtual Research Environment Paediatric Endocrinology
Content Type	Text
Resource Type	Article

Sl.	Authority	Responsibilities	Communication Details
1	Ministry of Education (GoI), Department of Higher Education	Sanctioning Authority	https://www.education.gov.in/ict-initiatives
2	Indian Institute of Technology Kharagpur	Host Institute of the Project: The host institute of the project is responsible for providing infrastructure support and hosting the project	https://www.iitkgp.ac.in
3	National Digital Library of India Office, Indian Institute of Technology Kharagpur	The administrative and infrastructural headquarters of the project	Dr. B. Sutradhar bsutra@ndl.gov.in
4	Project PI / Joint PI	Principal Investigator and Joint Principal Investigators of the project	Dr. B. Sutradhar bsutra@ndl.gov.in Prof. Saswat Chakrabarti will be added soon
5	Website/Portal (Helpdesk)	Queries regarding NDLI and its services	support@ndl.gov.in
6	Contents and Copyright Issues	Queries related to content curation and copyright issues	content@ndl.gov.in
7	National Digital Library of India Club (NDLI Club)	Queries related to NDLI Club formation, support, user awareness program, seminar/symposium, collaboration, social media, promotion, and outreach	clubsupport@ndl.gov.in
8	Digital Preservation Centre (DPC)	Assistance with digitizing and archiving copyright-free printed books	dpc@ndl.gov.in
9	IDR Setup or Support	Queries related to establishment and support of Institutional Digital Repository (IDR) and IDR workshops	idr@ndl.gov.in

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