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Hoffmann, R. A wiki for the life sciences where authorship matters. Nature Genetics (2008)
MeSH Review


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Disease relevance of Registries


Psychiatry related information on Registries

  • In this review we describe the Swedish rheumatology registries, including the Swedish RA registry and the Swedish biologics registries ARTIS (Antirheumatic Therapies Iin Sweden), SSATG (Southern Sweden Antirheumatic Therapy Group), and STURE (Stockholm Tumor Necrosis Factor-a Follow-up Registry) [6].

High impact information on Registries

  • Mortality data were obtained by linkage to the Canadian Mortality Data Base of Statistics Canada, provincial cancer registries, and annual follow-up of cases through physicians [7].
  • METHODS: Using the national population register, the Danish Cancer Registry, and other registers, we determined the incidence of cancer among Thorotrast-injected patients [8].
  • The improvement of surveillance will entail the ongoing collection of information from population-based surveys, such as the Behavioral Risk Factor Surveillance System; the collection of data on provider practices (for example, through the National Ambulatory Medical Care Survey); and the establishment of population-based registries [9].
  • We have analyzed the disease status (IDDM) and genetic marker (HLA-A/B haplotype) data from 61 multiple-case IDDM families ascertained through two registries in the Pittsburgh, Pennsylvania, area [10].
  • METHODS: Cases comprised 230 subjects recently diagnosed as having SLE (144 African American and 86 white) from university and community-based clinics, and controls comprised 276 age-, sex-, and state-matched subjects (72 African American and 204 white) recruited from driver's license registries [11].

Chemical compound and disease context of Registries


Biological context of Registries

  • The present level of inbreeding in Norway (obtained from the Medical Registration of Bith) is discussed and compared with information in the 1891 census, with the parish registers between 1889and 1902, and with the parochial lists for the years 1903-1941 [17].
  • Histocompatibility testing guidelines for hematopoietic stem cell transplantation using volunteer donors: report from The World Marrow Donor Association. Quality Assurance and Donor Registries Working Groups of the World Marrow Donor Association [18].
  • We have studied the distribution of the three genotypes, delta F508/delta F508, delta F508/x, x/x, in the American, Canadian and French data registries concerning CF; "x" represents the non-delta F508 mutations [19].
  • 1. Since 1988, 1-year graft survival rates of first cadaver transplants have improved from 78 to 80% (p less than 0.01) in both the UCLA and UNOS Renal Transplant Registries [20].
  • CONCLUSION: Whole genome amplification makes it feasible to conduct large genetic epidemiological studies using PKU screening registries [21].

Anatomical context of Registries

  • HLA-A, -B and -DR antigen frequencies of the London Cord Blood Bank units differ from those found in established bone marrow donor registries [22].
  • To investigate a possible association between maternal smoking during pregnancy and craniosynostosis (premature closure of one or more of the cranial sutures), a study was conducted using Swedish health registries [23].
  • In conclusion, an unrelated hematopoietic stem cell donor should be simultaneously searched for in cord blood banks and in bone marrow donor registries for patients lacking an HLA-identical sibling hematopoietic stem cell donor [24].
  • More recent larger prospective cohort studies and registries of patients receiving long-term oral anticoagulation, including patients with mechanical heart valves, who underwent bridging therapy with mostly treatment-dose low-molecular-weight heparin for both major and non-major elective invasive procedures or surgeries have been completed [25].
  • Mortality rates were lower among patients with multivessel coronary artery disease who underwent coronary artery bypass grafting (CABG) than among similar patients who underwent percutaneous coronary intervention (PCI) in an analysis of data from New York State registries (N Engl J Med 2005; 352:2174-2183) [26].

Associations of Registries with chemical compounds

  • Case women were identified through cancer registries in three states (Massachusetts, New Hampshire, and Wisconsin); control women were identified through statewide driver's license lists (age <65 years) or Medicare lists (ages 65-79 years) [27].
  • METHODS: Published data from trials and registries that compared clopidogrel with ticlopidine in patients receiving coronary stents were pooled, and a formal meta-analysis was performed [28].
  • Glaxo Wellcome has developed 5 international registries: (1) the Acyclovir Pregnancy Registry, (2) the Antiretroviral Pregnancy Registry, (3) the Lamotrigine Pregnancy Registry, (4) the Sumatriptan Pregnancy Registry, and (5) the Bupropion Pregnancy Registry [29].
  • The transplant organizations collaborate by linking patient records on the EDTA Register. These large central Registries have evolved specialized computer methodologies for recording the follow-up of patients, researching the patient file, and improving the service to centers [30].
  • Subjects were assigned randomly to take 30 mg/day beta-carotene (512 subjects) or 25,000 IU/day retinol (512 subjects) and followed up through death and cancer registries from the start of the study in June 1990 till May 1995 [31].

Gene context of Registries


Analytical, diagnostic and therapeutic context of Registries


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  2. Rheumatoid arthritis and cancer studies based on linking nationwide registries in Finland. Hakulinen, T., Isomaki, H., Knekt, P. Am. J. Med. (1985) [Pubmed]
  3. Influence of stage at diagnosis on survival differences for rectal cancer in three European populations. Monnet, E., Faivre, J., Raymond, L., Garau, I. Br. J. Cancer (1999) [Pubmed]
  4. Long-term perspective on the prevalent-cohort biases in studies of human immunodeficiency virus progression. Alcabes, P., Pezzotti, P., Phillips, A.N., Rezza, G., Vlahov, D. Am. J. Epidemiol. (1997) [Pubmed]
  5. Tumor Necrosis Factor-a Inhibition and VATER Association: A Causal Relationship. Carter, J.D., Valeriano, J., Vasey, F.B. J. Rheumatol. (2006) [Pubmed]
  6. Rheumatoid arthritis registries in Sweden. van Vollenhoven, R.F., Askling, J. Clin. Exp. Rheumatol. (2005) [Pubmed]
  7. Premorbid diet and the prognosis of women with breast cancer. Jain, M., Miller, A.B., To, T. J. Natl. Cancer Inst. (1994) [Pubmed]
  8. Cancer incidence among Danish Thorotrast-exposed patients. Andersson, M., Storm, H.H. J. Natl. Cancer Inst. (1992) [Pubmed]
  9. Public health surveillance for hereditary hemochromatosis. Wetterhall, S.F., Cogswell, M.E., Kowdley, K.V. Ann. Intern. Med. (1998) [Pubmed]
  10. Detection of genetic heterogeneity between families of insulin-dependent diabetes mellitus patients using linkage analysis. Harris, E.L., Wagener, D.K., Dorman, J.S., Drash, A.L. Am. J. Hum. Genet. (1985) [Pubmed]
  11. Association of Epstein-Barr virus with systemic lupus erythematosus: effect modification by race, age, and cytotoxic T lymphocyte-associated antigen 4 genotype. Parks, C.G., Cooper, G.S., Hudson, L.L., Dooley, M.A., Treadwell, E.L., St Clair, E.W., Gilkeson, G.S., Pandey, J.P. Arthritis Rheum. (2005) [Pubmed]
  12. Safety of sumatriptan in pregnancy: a review of the data so far. Loder, E. CNS drugs. (2003) [Pubmed]
  13. Lamotrigine and the risk of malformations in pregnancy. Cunnington, M., Tennis, P. Neurology (2005) [Pubmed]
  14. Head and neck cancer in a young age group: high incidence in black patients. Slotman, G.J., Swaminathan, A.P., Rush, B.F. Head & neck surgery. (1983) [Pubmed]
  15. Health status and quality of life of people with multiple sclerosis. Ford, H.L., Gerry, E., Johnson, M.H., Tennant, A. Disability and rehabilitation. (2001) [Pubmed]
  16. Carcinoma of the male breast: a 27-year community experience. Beals, D.A., Wheeler, W.E. The West Virginia medical journal. (1991) [Pubmed]
  17. Frequency of phenylketonuria in Norway. Saugstad, L.F. Clin. Genet. (1975) [Pubmed]
  18. Histocompatibility testing guidelines for hematopoietic stem cell transplantation using volunteer donors: report from The World Marrow Donor Association. Quality Assurance and Donor Registries Working Groups of the World Marrow Donor Association. Hurley, C.K., Wade, J.A., Oudshoorn, M., Middleton, D., Kukuruga, D., Navarrete, C., Christiansen, F., Hegland, J., Ren, E.C., Andersen, I., Cleaver, S.A., Brautbar, C., Raffoux, C. Bone Marrow Transplant. (1999) [Pubmed]
  19. An abnormal distribution of delta F508 genotypes in cystic fibrosis patient registries. Feingold, J., Guilloud-Bataille, M., De Crozes, D. Ann. Genet. (1998) [Pubmed]
  20. Recent improvements in cadaver-donor kidney retransplantation. Mitsuishi, Y., Cecka, J.M. Clinical transplants. (1991) [Pubmed]
  21. Phenylketonuria screening registry as a resource for population genetic studies. Hannelius, U., Lindgren, C.M., Melén, E., Malmberg, A., von Dobeln, U., Kere, J. J. Med. Genet. (2005) [Pubmed]
  22. HLA-A, -B and -DR antigen frequencies of the London Cord Blood Bank units differ from those found in established bone marrow donor registries. Brown, J., Poles, A., Brown, C.J., Contreras, M., Navarrete, C.V. Bone Marrow Transplant. (2000) [Pubmed]
  23. Maternal smoking and craniosynostosis. Källén, K. Teratology (1999) [Pubmed]
  24. Cord blood transplant: strategy of alternative donor search. Gluckman, E., Rocha, V. Springer Semin. Immunopathol. (2004) [Pubmed]
  25. Perioperative bridging interruption with heparin for the patient receiving long-term anticoagulation. Spyropoulos, A.C., Turpie, A.G. Current opinion in pulmonary medicine. (2005) [Pubmed]
  26. The optimal revascularization strategy for multivessel coronary artery disease: the debate continues. Casserly, I.P. Cleveland Clinic journal of medicine. (2006) [Pubmed]
  27. Exposure to breast milk in infancy and adult breast cancer risk. Titus-Ernstoff, L., Egan, K.M., Newcomb, P.A., Baron, J.A., Stampfer, M., Greenberg, E.R., Cole, B.F., Ding, J., Willett, W., Trichopoulos, D. J. Natl. Cancer Inst. (1998) [Pubmed]
  28. Meta-analysis of randomized and registry comparisons of ticlopidine with clopidogrel after stenting. Bhatt, D.L., Bertrand, M.E., Berger, P.B., L'Allier, P.L., Moussa, I., Moses, J.W., Dangas, G., Taniuchi, M., Lasala, J.M., Holmes, D.R., Ellis, S.G., Topol, E.J. J. Am. Coll. Cardiol. (2002) [Pubmed]
  29. The Pregnancy Registry program at Glaxo Wellcome Company. White, A.D., Andrews, E.B. J. Allergy Clin. Immunol. (1999) [Pubmed]
  30. Evolving methodologies in computerized European Registries. Wing, A.J., D'Amaro, J., Lamm, L.U., Selwood, N.H. Kidney Int. (1983) [Pubmed]
  31. Vitamin A and cancer prevention II: comparison of the effects of retinol and beta-carotene. de Klerk, N.H., Musk, A.W., Ambrosini, G.L., Eccles, J.L., Hansen, J., Olsen, N., Watts, V.L., Lund, H.G., Pang, S.C., Beilby, J., Hobbs, M.S. Int. J. Cancer (1998) [Pubmed]
  32. Gene-environment interaction in hereditary nonpolyposis colorectal cancer with implications for diagnosis and genetic testing. Park, J.G., Park, Y.J., Wijnen, J.T., Vasen, H.F. Int. J. Cancer (1999) [Pubmed]
  33. Real-world effectiveness of select biologic and DMARD monotherapy and combination therapy in the treatment of rheumatoid arthritis: results from the RADIUS observational registry. Weaver, A.L., Lautzenheiser, R.L., Schiff, M.H., Gibofsky, A., Perruquet, J.L., Luetkemeyer, J., Paulus, H.E., Xia, H.A., Leff, J.A. Current medical research and opinion. (2006) [Pubmed]
  34. Prophylactic oophorectomy in carriers of BRCA1 or BRCA2 mutations. Rebbeck, T.R., Lynch, H.T., Neuhausen, S.L., Narod, S.A., Van't Veer, L., Garber, J.E., Evans, G., Isaacs, C., Daly, M.B., Matloff, E., Olopade, O.I., Weber, B.L. N. Engl. J. Med. (2002) [Pubmed]
  35. Influence of mutation type on clinical expression of Leber hereditary optic neuropathy. Spruijt, L., Kolbach, D.N., de Coo, R.F., Plomp, A.S., Bauer, N.J., Smeets, H.J., de Die-Smulders, C.E. Am. J. Ophthalmol. (2006) [Pubmed]
  36. Regional variability in the epidemiology of childhood diabetes in Italy. Cherubini, V., Chiarelli, F., Altobelli, E., Verrotti, A., Carle, F. Journal of pediatric endocrinology & metabolism : JPEM. (1997) [Pubmed]
  37. Association of autoantibodies to nuclear lamin B1 with thromboprotection in systemic lupus erythematosus: lack of evidence for a direct role of lamin B1 in apoptotic blebs. Dieudé, M., Senécal, J.L., Rauch, J., Hanly, J.G., Fortin, P., Brassard, N., Raymond, Y. Arthritis Rheum. (2002) [Pubmed]
  38. Cancer incidence in atomic bomb survivors. Part I: Use of the tumor registries in Hiroshima and Nagasaki for incidence studies. Mabuchi, K., Soda, M., Ron, E., Tokunaga, M., Ochikubo, S., Sugimoto, S., Ikeda, T., Terasaki, M., Preston, D.L., Thompson, D.E. Radiat. Res. (1994) [Pubmed]
  39. Maximizing optimal hematopoietic stem cell donor selection from registries of unrelated adult volunteers. Hurley, C.K., Fernandez Vina, M., Setterholm, M. Tissue Antigens (2003) [Pubmed]
  40. Excess mortality in Black compared with White patients with Type 1 diabetes: an examination of underlying causes. Bosnyak, Z., Nishimura, R., Hagan Hughes, M., Tajima, N., Becker, D., Tuomilehto, J., Orchard, T.J. Diabet. Med. (2005) [Pubmed]
  41. Increasing use of gonadotropin-releasing hormone agonists for the treatment of localized prostate carcinoma. Shahinian, V.B., Kuo, Y.F., Freeman, J.L., Orihuela, E., Goodwin, J.S. Cancer (2005) [Pubmed]
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