Disease relevance of Registries

• DESIGN AND SETTING--Population-based case-control study in Wisconsin, Massachusetts, Maine, and New Hampshire. STUDY PARTICIPANTS--Cases were women younger than 75 years with a new diagnosis of breast cancer (n = 6888), identified from statewide tumor registries [1].
• The two registries involved were the Social Insurance Institution's Population Register, which collects information on medication for certain chronic diseases since 1967 including rheumatoid arthritis, and the Finnish Cancer Registry, which has data on all cancer patients in Finland since 1953 [2].
• As data on stage at diagnosis were available for rectal cancers in three European population-based registries (Geneva Switzerland; Côte d'Or, France; Mallorca, Spain), we compared relative survival while assessing the effect of stage in a multiple regression model [3].
• Acquired immunodeficiency syndrome (AIDS) diagnoses, based on the 1987 Centers for Disease Control case definition, and mortality were ascertained through Italian national registries through 1994 [4].
• Patient registries of women who take TNF-a antagonists during pregnancy also need to be followed to see if there is an increase in the birth defects that are part of VATER association [5].

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

• Information was obtained regarding the impact of migraine on pregnancy outcome, and data on sumatriptan use in pregnancy were obtained from animal studies, preclinical drug trials, postmarketing surveillance efforts, prospective pregnancy registries, national birth registries and teratogen information services [12].
• CONCLUSIONS: The risk of all major birth defects after first-trimester exposure to lamotrigine monotherapy (2.9%) was similar to that in the general population and in other registries enrolling women exposed to antiepileptic monotherapy (3.3% to 4.5%) [13].
• From the Tumor Registries of the East Orange, New Jersey, Veterans Administration Medical Center, and the College of Medicine and Dentistry of New Jersey/New Jersey Medical School, 1,066 cases of head and neck cancer were reviewed [14].
• The population register is of the prevalent population of 760 people with multiple sclerosis resident in the Leeds Health Authority [15].
• After observing several recent cases of male breast cancer, we reviewed the tumor registries for the past 27 years at Marshall University affiliated hospitals [16].

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

• Data on site of the cancer, age at diagnosis and pathology were collected from 155 families with suspected HNPCC known at the Korean and Dutch HNPCC registries [32].
• RESEARCH DESIGN AND METHODS: RADIUS (Rheumatoid Arthritis DMARD Intervention and Utilization Study) comprises two prospective, 5-year, observational registries of over 10 000 patients [33].
• METHODS: A total of 551 women with disease-associated germ-line BRCA1 or BRCA2 mutations were identified from registries and studied for the occurrence of ovarian and breast cancer [34].
• The prevalence of LHON was determined on the basis of anamnestic evaluation of patients in 1963 and by using population registers of that period [35].
• The aims is to coordinate local IDDM registries, to promote the start of new registries in uncovered areas, and to standardize registration and data collection [36].

Analytical, diagnostic and therapeutic context of Registries

• METHODS: A cross-sectional study was performed using serum samples obtained at first evaluation of 259 English Canadian and French Canadian patients from SLE registries at 3 hospitals [37].
• Cancer incidence in atomic bomb survivors. Part I: Use of the tumor registries in Hiroshima and Nagasaki for incidence studies [38].
• Maximizing optimal hematopoietic stem cell donor selection from registries of unrelated adult volunteers [39].
• METHODS: A longitudinal study of 1261 [1184 White (93.9%) and 76 Black (6.0%)] individuals diagnosed with Type 1 diabetes between 1965 and 1979, at age<17 years from the Allegheny County, Pennsylvania and Children's Hospital of Pittsburgh registries [40].
• The authors examined the time trends and patterns of use for androgen deprivation in the form of gonadotropin-releasing hormone (GnRH) agonists or orchiectomy, in population-based tumor registries [41].

References