THE DATABASE OF CANCER CONTROL FOR DEVELOPING GCOUNTRIES MARK LODGE Director, Programme Development International Network for Cancer Treatment and Research Oxford UK
Outline Purpose of clinical research Data on inaccessibility of Egyptian research Need for a new mechanism for storing research from developing countries Egyptian pilot study for Dtb Database for Cancer Control
Purpose of Clinical Research Address questions of immediate concern to the healthcare of patients Inform clinical practice Prevent harm Improve the care delivered dli dto patients/prevention i Extend the knowledge base & explore new directions Provide pointers to further research
Requirements of Clinical Research Clinical research should be Ethical Genuine Relevant Good methodological quality Accessible
Reports of Cancer papers published in 2006 indexed don PubMed Country [ad] AND Cancer[sb] AND 2006[dp] 201,139 reports in subgroup Cancer in 2006. USA: 54,884 (27%) UK: 10,455 ( 5%) Africa: 931 ( 0.5%)
Dominance of Biomedical Literature indexed don Medline Eight countries account for 80% of the journals indexed on Medline 2007 (5164) USA 2181 (42%) England 949 (18%) Germany 273 ( 5%) Netherlands 241 ( 5%) Japan 162 ( 3%) Switzerland 139 ( 3%) France 106 ( 2%) Italy 98 ( 2%) Source : JAIN NC* CURRENT SCI ENCE, 2007 Vol. 93(12):1650 *Division of Publication and Information, Indian Council of Medical Research, New Delhi, INDIA
Journals published in Egypt & indexed don Medline (7/5624)) Clinical & Developmental Immunology Eastern Mediterranean Health Journal The Egyptian Journal of Immunology Infectious Diseases in Obstetrics and Gynecology Journal of the Egyptian National Cancer Institute The Journal of the Egyptian Public Health Association Journal of the Egyptian Society of Parasitology
List of 69 publications relevant to Egypt List: 45 have Egypt or Egyptian in the title Medline: 12 of 5,246 serials indexed have Egypt or Egyptian in the title
Accessibility of published reports of Egyptian cancer research 2000 2006 NCI Cairo Yearbooks 2000 2006 2006 J Egypt Nat Cancer Inst. 2000 2006 5 areas of cancer control Breast cancer Bladder cancer Lymphoma Paediatric malignancies Palliative i & Supportive Care
Accessibility of published reports of Egyptian cancer research 2000 2006 Search of NCI Yearbooks & J Egypt Nat Cancer Inst Entered on ProCite bibliographic database Relevant published papers identified Corresponding search on PubMed Search terms: NAME OF AUTHOR[au] AND YEAR OF PUBLICATION[dp]
Accessibility of published reports of Results Egyptian cancer research 2000 20062006 681 studies / allareasof areas cancer care 132 (19%) dissertations 13 (2%) unpublished 536 (79%) published reports of research 481 (71%) journal papers 55 (8%) conference proceedings
Journal of Egyptian National Cancer Institute 2000 2006 Articles publ. 2000 2006: 283 Articles indexed on Medline : 111 (39%) Non Indexed articles : 172 (61%)
Accessibility of published reports of Egyptian cancer research 2000 2006 Breast cancer Published reports 63 Accessible via PubMed 27 Not accessible (Conf) 36(3) % reports not indexed 57%
Accessibility of published reports of Egyptian cancer research 2000 2006 Bladder cancer Published reports 59 Accessible via PubMed 28 Not accessible (Conf) 31(3) % reports not indexed 52%
Accessibility of published reports of Egyptian cancer research 2000 2006 Lymphoma Published reports 26 Accessible via PubMed 12 Not accessible (Conf) 14(1) % reports not indexed 54%
Accessibility of published reports of Egyptian cancer research 2000 2006 Paediatric malignancy Published reports 47 Accessible via PubMed 21 Not accessible (Conf) 26(4) % reports not indexed 55%
Accessibility of published reports of Egyptian cancer research 2000 2006 Palliative & Supportive Care Published reports 46 Accessible via PubMed 21 Not accessible (Conf) 26(4) % reports not indexed 61%
Accessibility of published reports of Egyptian cancer research 2000 2006 Result >50% of research reports (mean 55.8%; range 52% 61%) are not accessible via PubMed
Accessibility of published reports of Egyptian cancer research 2000 2006 Conclusions PubMed does not provide adequate access to Egyptian research in these areas No requirement for PubMed to include all studies Outcomes of Egyptian research may be more difficult to access (especially to decision makers outside Egypt) Relevant research data may be unread/unreviewed A new mechanism is needed to provide comprehensive access
Database of Cancer Control Egyptian Pilot Project INCTR + ESO + NCI Cairo Purpose To demonstrate t the methodology for building a database of cancer control research within a developing country context January 2008 December 2009
Database of Cancer Control Inclusion criteria Egyptian Pilot Project Studies conducted in Egypt or relevant to the Egyptian population 5 areas of cancer (breast cancer, bladder cancer, lymphoma, childhood cancers and palliative & supportive care) Published 2000 2006 The studies already identified to form the foundation of the Egyptian pilot database
Database of Cancer Control Egyptian Pilot Project Search strategy Databases: PubMed, Embase, Scopus, Cochrane Library Journals : General and specialist journals not indexed on databases and indexed journals known to be under represented Conference proceedings University theses Industry: reports of studies conducted within Egypt Cancer registry monographs and reports
Database of Cancer Control User friendly Egyptian Pilot Project Coded for use by health care professionals Accessible through the NCI Cairo website. Plain language guide to help users User group to provide consumer feedback.
Database of Cancer Control Egyptian Pilot Project NCI responsibility for management & maintenance Outcomes: A comprehensive listing of Egyptian research relevant to the five areas of cancer research A structure and methodology for extending the database to all areas of Egyptian cancer control Visible international profile for Egyptian research Facilitates systematic reviews of the relevance and methodological quality of research More informed research & development agenda (national and international)
Conclusion If clinical research is to be at all useful to clinical practice it must first be visible Research published in developing countries is currently under represented represented by the leading bibliographic databases New database needed to ensure outcomes of cancer control research are more easily accessible to decision makers (clinicians, researchers, policy makers makersandpatients) and New database should be developed and maintained on site in developing countries
Quality Discussion of quality issues should be evidence based Need for systematic reviews of relevance and methodological quality Over half hlfh the evidence is missing i Exclusion is not always indicator of poor quality
Acknowledgements ASCO/SEMCO organising committee European School of Oncology Dr Hussein Khaled, hlddr Atef Badran, NCI Ci Cairo International Network for Cancer Treatment and Research
Thank you Mark Lodge International Network Cancer Treatment and Research Oxford UK mlodge@canet.org