NDLI: Supporting UK-wide e-clinical trials and studies

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Supporting UK-wide e-clinical trials and studies

Content Provider	ACM Digital Library
Author	Ajayi, Oluwafemi Stell, Anthony Sinnott, Richard
Abstract	As clinical trials and epidemiological studies become increasingly large, covering wider (national) geographical areas and involving ever broader populations, the need to provide an information management infrastructure that can support such endeavours is essential. A wealth of clinical data now exists at varying levels of care (primary care, secondary care, etc.). Simple, secure access to such data would greatly benefit the key processes involved in clinical trials and epidemiological studies: patient recruitment, data collection and study management. The Grid paradigm provides one model for seamless access to such data and support of these processes. The VOTES project (Virtual Organisations for Trials and Epidemiological Studies) is a collaboration between several UK institutions to implement a generic framework that effectively leverages the available health-care information across the UK to support more efficient gathering and processing of trial information. The structure of the information available in the health-care domain in the UK itself varies broadly in-line with the national boundaries of the constituent states (England, Scotland, Wales and Northern Ireland). Technologies must address these political boundaries and the impact these boundaries have in terms of for example, information governance, policies, and of course large-scale heterogeneous distribution of the data sets themselves. This paper outlines the methodology in implementing the framework between three specific data sources that serve as useful case studies: Scottish data from the Scottish Care Information (SCI) Store data repository, data on the General Practice Research Database (GPRD) diabetes trial at Imperial College London, and benign prostate hypoplasia (BPH) data from the University of Nottingham. The design, implementation and wider research issues are discussed along with the technological challenges encountered in the project in the application of Grid technologies.
Starting Page	1
Ending Page	8
Page Count	8
File Format	PDF
ISBN	9781595938350
DOI	10.1145/1341811.1341828
Language	English
Publisher	Association for Computing Machinery (ACM)
Publisher Date	2008-01-29
Publisher Place	New York
Access Restriction	Subscribed
Subject Keyword	Data grids Clinical trials Distributed infrastructures and security
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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