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At least 613 records · Page 34Linked to original sources
PubMed1992

Data collection strategies in genetic epidemiology: The Epilepsy Family Study of Columbia University.

A large-scale study of genetic influences on seizure disorders is described here as a primer of tested methods for collection of family history data. 1957 adult probands with epilepsy were ascertained from voluntary organizations. Personal and family history data were obtained from probands in semistructured telephone interviews. To increase sensitivity, an independent family history was obtained from a second family informant in a similar interview. To increase specificity and diagnostic detail, family members reported to be affected were interviewed, and medical records of probands and affected relatives were collected. Participation rates for probands were 84-90%. Interviews were completed with second informants in 67% of families, and with 51% of eligible affected relatives. The main reasons for non-interview were lack of permission from probands and difficulties in locating relatives. Although 90% of probands gave verbal permission for medical record review, only 75% of these signed and returned consent forms for this purpose. Physicians returned 87% of the records requested. The resulting proportion of probands with medical records was 59%. These findings illustrate the complexity involved in assembling useful databases in genetic epidemiology.

Adult↗
PubMed2004

Improving mortality of coronary surgery over first four years of independent practice: retrospective examination of prospectively collected data from 15 surgeons.

OBJECTIVE: To study the "learning curve" associated with independent practice in coronary artery surgery. DESIGN: Retrospective analysis of prospectively collected data. SETTING: All NHS centres in north west England that carry out cardiac surgery in adults. PARTICIPANTS: 18 913 patients undergoing coronary artery surgery for the first time between April 1997 and March 2003, 5678 of whom were operated on by 15 surgeons in the first four years after their consultant appointment. MAIN OUTCOME MEASURES: Observed and predicted mortality (EuroSCORE) for surgeons in their first, second, third, and fourth years after appointment as a consultant compared with figures for established surgeons. RESULTS: Overall mortality decreased over the six years of study (P = 0.01). Of the patients operated on by established surgeons or newly appointed consultants, 265/13,235 (2.0%) and 109/5678 (1.9%), respectively, died (P = 0.71). There was a progressive decrease in observed mortality with time after appointment as a consultant from 2.2% in the first year to 1.2% in the fourth year (P = 0.049). This result remained significant after adjustment for time and case mix (P = 0.019). CONCLUSIONS: Mortality in patients operated on by newly appointed consultant surgeons is similar to mortality in patients operated on by established surgeons. There are significant decreases in crude and risk adjusted mortality in the four years after appointment. These findings should influence the nature of practice in newly appointed surgeons.

Adult↗
PubMed2002

Risk factors for cardiovascular malformation--a study based on prospectively collected data.

OBJECTIVES: The aim of this study was to identify risk factors for cardiovascular malformation. METHODS: In a case-referent study prospectively collected data were obtained from original medical records. The study included 277 woman who had infants with a severe cardiac defect, and for each case two referents (medical records study) were included. Data on parental age, maternal reproductive history, disease in early pregnancy, reported maternal use of drugs and alcohol, smoking habits, parental occupation, and maternal body mass index (BMI) were extracted. When data were available from Swedish medical health registers, a comparison was made (register study) between all infants with cardiovascular defects (2208) and all infants born (175 768). RESULTS: Maternal diabetes mellitus was associated with an increased risk for cardiovascular malformation [odds ratio (OR) 2.38, 95% confidence interval (95% CI) 1.36-4.15], as was a high BMI (> 29) (OR 1.46, 95%CI 1.12-1.90). A tendency towards an increased risk was found for involuntary childlessness, spontaneous abortion, thyroid drugs, and nonsteroid anti-inflammatory drugs. CONCLUSIONS: Some known risk factors for cardiac defects (eg, maternal diabetes mellitus and the use of antiepileptics) could be identified. Other postulated risk factors could not be verified, for example, paternal age and parental occupation. The use of medicinal drugs seems not to be a major factor in the etiology of cardiac defects. It is possible, however, that there is an association with the use of nonsteroid anti-inflammatory drugs or drugs for thyroid disease. The relationship between a high BMI and cardiovascular malformation observed in this study may be explained by impaired maternal glucose tolerance.

Body Mass Index↗
PubMed1983

[Psychoanalytic data collection and the problem of dates--a contribution to the basic problem in psychoanalysis].

My thesis is that the specifically psychoanalytic form of data collection is unsuitable for checking at least two groups of hypotheses in psychoanalysis, namely neurosis aetiology and developmental psychology. The reason lies in the problem of reconstructing dates. In the psychoanalytic literature there are a number of arguments for the reconstruction of dates ( retrodating ). These arguments are critically examined and rejected. In the final part, I discuss an alternative approach, psychoanalytic child observation, and its advantages and problems.

Adult↗
PubMed1977

A review of the observational data-collection and reliability procedures reported in The Journal of Applied Behavior Analysis.

The research published in the Journal of Applied Behavior Analysis (1968 to 1975) was surveyed for three basic elements: data-collection methods, reliability procedures, and reliability scores. Three-quarters of the studies reported observational data. Most of these studies' observational methods were variations of event recording, trial scoring, interval recording, or time-sample recording. Almost all studies reported assessment of observer reliability, usually total or point-by-point percentage agreement scores. About half the agreement scores were consistently above 90%. Less than one-quarter of the studies reported that reliability was assessed at least once per condition.

Journal Article↗
PubMed1984

Sampling and data collection methods in the National Evaluation of School Nutrition Programs.

A nested sampling design is described in which school districts are selected, schools within those districts that cover grades one through 12 are selected, and finally students within each of the grades are selected. The article describes how nutritional status information is collected from each student, economic and food expenditure data are collected from the students' parents, and information on food services is collected from district and school administrators. Sample weighting and adjustments for nonresponse bias are discussed in the appendix.

Adolescent↗
PubMed1995

Four channel foetal ECG data collection system.

Recently there has been an increased interest in the development of improved techniques for the diagnosis of foetal distress during labour. Many of the techniques have been based on extracting extra information from the foetal ECG obtained from a scalp electrode. To fully develop and test the prototypes of these systems requires recorded data from patients. However due to the poor level of prediction of these cases at present, it is very difficult to collect the data using simple single channel data collection systems. The system described here will automatically collect and document data from up to four deliveries at the same time and does not add to the work load of the clinical staff.

Biomedical Engineering↗
PubMed2006

Transition to the new race/ethnicity data collection standards in the Department of Veterans Affairs.

BACKGROUND: Patient race in the Department of Veterans Affairs (VA) information system was previously recorded based on an administrative or clinical employee's observation. Since 2003, the VA started to collect self-reported race in compliance with a new federal guideline. We investigated the implications of this transition for using race/ethnicity data in multi-year trends in the VA and in other healthcare data systems that make the transition. METHODS: All unique users of VA healthcare services with self-reported race/ethnicity data in 2004 were compared with their prior observer-recorded race/ethnicity data from 1997-2002 (N = 988,277). RESULTS: In 2004, only about 39% of all VA healthcare users reported race/ethnicity values other than "unknown" or "declined." Females reported race/ethnicity at a lower rate than males (27% vs. 40%; p < 0.001). Over 95% of observer-recorded data agreed with self-reported data. Compared with the patient self-reported data, the observer-recorded White and African American races were accurate for 98% (kappa = 0.89) and 94% (kappa = 0.93) individuals, respectively. Accuracy of observer-recorded races was much worse for other minority groups with kappa coefficients ranging between 0.38 for American Indian or Alaskan Natives and 0.79 for Hispanic Whites. When observer-recorded race/ethnicity values were reclassified into non-African American groups, they agreed with the self-reported data for 98% of all individuals (kappa = 0.93). CONCLUSION: For overall VA healthcare users, the agreement between observer-recorded and self-reported race/ethnicity was excellent and observer-recorded and self-reported data can be used together for multi-year trends without creating serious bias. However, this study also showed that observation was not a reliable method of race/ethnicity data collection for non-African American minorities and racial disparity might be underestimated if observer-recorded data are used due to systematic patterns of inaccurate race/ethnicity assignments.

Journal Article↗
PubMed2002

SWEET-DB: an attempt to create annotated data collections for carbohydrates.

Complex carbohydrates are known as mediators of complex cellular events. Concerning their structural diversity, their potential of information content is several orders of magnitude higher in a short sequence than any other biological macromolecule. SWEET-DB (http://www.dkfz.de/spec2/sweetdb/) is an attempt to use modern web techniques to annotate and/or cross-reference carbohydrate-related data collections which allow glycoscientists to find important data for compounds of interest in a compact and well-structured representation. Currently, reference data taken from three data sources can be retrieved for a given carbohydrate (sub)structure. The sources are CarbBank structures and literature references (linked to NCBI PubMed service), NMR data taken from SugaBase and 3D co-ordinates generated with SWEET-II. The main purpose of SWEET-DB is to enable an easy access to all data stored for one carbohydrate structure entering a complete sequence or parts thereof. Access to SWEET-DB contents is provided with the help of separate input spreadsheets for (sub)structures, bibliographic data, general structural data like molecular weight, NMR spectra and biological data. A detailed online tutorial is available at http://www.dkfz.de/spec2/sweetdb/nar/.

Carbohydrate Conformation↗
PubMed1984

[Computer program for the processing of data collected during therapeutic trials in psychiatry].

A computer program is described which has been developed over several years and allows for the easy processing of psychiatric data gathered in clinical trials. It provides user-defined parametrization of a computer-aided data entry system, the use of the program created to input data to the computer and the data processing of the data collected either through modifications of the file created or by statistical analysis, the procedures of which have been simplified to enable its performance even by lay people.

Clinical Trials as Topic↗
PubMed1996

A novel approach to data collection in a case-control study of cancer and occupational exposures.

BACKGROUND: In community and hospital-based case-control studies, the occupational data collected in interviews are usually limited to responses to general questions asked of all study subjects. A procedure is described in which more detailed information can be collected in an efficient, standardized and systematic way. METHODS: A generic work history is initially collected from all subjects using a computer-assisted interview. The work history includes job title, type of business, job activities, materials and chemicals, and tools and equipment used. After responses are entered into the computer by the interviewer, the computer searches a synonym file to identify possible job-specific modules relevant to the reported job. The modules are detailed questionnaires that address specific jobs administered after obtaining the generic work history. The modules are used to ask questions about the work environment; sources of exposure; factors affecting the movement of the agent from the source to the subject, such as local exhaust ventilation; and individual and job characteristics. After the interview is completed, the work history and responses to the modules are sent electronically to an industrial hygienist who reviews the information using a custom-designed software package. Where ambiguities or contradictions occur in information reported by the respondent, or for jobs for which no module had been developed, the industrial hygienist generates up to 10 additional questions per job. These questions are sent back to the interviewer for administration of a short, second interview. CONCLUSIONS: These procedures, which are being successfully implemented in an on-going case-control study of brain tumours, should improve disease risk estimates over those derived from more traditional approaches to exposure assessment.

Brain Neoplasms↗
PubMedDate not supplied

The pediatric outcomes data collection instrument detects improvements for children with ambulatory cerebral palsy after orthopaedic intervention.

The purpose of this study was to assess whether the Pediatric Outcomes Data Collection Instrument (PODCI) was able to detect changes in function, as perceived by the parents of children and adolescents with cerebral palsy who had undergone lower limb soft tissue and/or bony surgeries. This was a retrospective study of 80 ambulatory patients who were seen in the motion laboratory and classified with the Gross Motor Functional Classification System (GMFCS). Significant changes (P < 0.05) were detected in the PODCI scores for upper extremity function, transfers and mobility, physical function and sports, and global function after surgery, by approximately 4% to 5%, whereas comfort (pain-free) did not significantly change. There was a significant difference in the PODCI scores preoperatively between GMFCS levels I, II, and III for upper extremity function, transfers and mobility, physical function and sports, and global function. Postoperative improvements were of equal magnitude for each GMFCS level. This suggests that the PODCI did not have a ceiling effect for high-functioning children. Age (+/-10 years) and surgery (soft tissue/soft tissue plus bony) were not significant factors for any of the subcategories preoperative to postoperative. In conclusion, the PODCI detected improvement as perceived by the parents in ambulatory children with cerebral palsy after lower-limb soft tissue and/or bony surgeries in 4 areas by a magnitude of approximately 4% to 5%.

Adolescent↗
PubMed1982

Comparative study of thallium emission myocardial tomography with 180 degrees and 360 degrees data collection.

Basic and clinical evaluation of thallium single-photon emission computed tomography (SPECT) using a rotating gamma camera with 180 degrees (LPO to RAO) data collection was carried out and compared with the full 360 degrees rotation. No attenuation correction was used. In a phantom study the reconstructed image from the 180 degrees scan revealed better resolution. Although the 180 degrees scan, when compared with the 360 degrees scan, showed great photon attenuation in the deep location of a line source in water, this problem was not significant in the clinical study of six normal hearts. In 11 cases with myocardial infarction, the perfusion defect was more clearly visualized in the 180 degrees scan. The defect-to-normal (D/N) wall-count ratio was lower in the 180 degrees scan (0.48 +/- 0.16; mean +/- s.d.) than in the 360 degrees scan (0.61 +/- 15, p less than 0.05), indicating superior lesion contrast in the former. These results suggest that for myocardial SPECT the 180 degrees collection method is a more effective technique in the clinical evaluation of coronary artery disease.

Coronary Circulation↗
PubMed1989

The leukaemia research fund data collection survey: the incidence and geographical distribution of acute myeloid leukemia.

This paper reports on the 2,362 cases of acute myeloid leukemia (AML) accumulated by the Leukaemia Research Fund Data Collection Survey between January 1, 1984, and June 30, 1988 providing the recent geographical distribution and descriptive epidemiology of the AML group of conditions. Statistical approaches to this data set are described. The study shows sex differences in distribution for those aged under 55 years compared to older age groups, with variable male: female incidence in different age bands and a male excess in those over 55 years. A nonsignificant excess of females was noted in those under 5 years. The rates presented for 1984-1986 are higher than those previously described for England and Wales. Statistically significant variation in incidence was seen both between counties and districts. At electoral ward level regression analyses were suggestive of links between AML and higher social class and living close to estuaries.

Adolescent↗
PubMed2006

The challenge of integrating disparate high-content data: epidemiological, clinical and laboratory data collected during an in-hospital study of chronic fatigue syndrome.

Chronic fatigue syndrome (CFS) is a debilitating illness characterized by multiple unexplained symptoms including fatigue, cognitive impairment and pain. People with CFS have no characteristic physical signs or diagnostic laboratory abnormalities, and the etiology and pathophysiology remain unknown. CFS represents a complex illness that includes alterations in homeostatic systems, involves multiple body systems and results from the combined action of many genes, environmental factors and risk-conferring behavior. In order to achieve understanding of complex illnesses, such as CFS, studies must collect relevant epidemiological, clinical and laboratory data and then integrate, analyze and interpret the information so as to obtain meaningful clinical and biological insight. This issue of Pharmacogenomics represents such an approach to CFS. Data was collected during a 2-day in-hospital study of persons with CFS, other medically and psychiatrically unexplained fatiguing illnesses and nonfatigued controls identified from the general population of Wichita, KS, USA. While in the hospital, the participants' psychiatric status, sleep characteristics and cognitive functioning was evaluated, and biological samples were collected to measure neuroendocrine status, autonomic nervous system function, systemic cytokines and peripheral blood gene expression. The data generated from these assessments was made available to a multidisciplinary group of 20 investigators from around the world who were challenged with revealing new insight and algorithms for integration of this complex, high-content data and, if possible, identifying molecular markers and elucidating pathophysiology of chronic fatigue. The group was divided into four teams with representation from the disciplines of medicine, mathematics, biology, engineering and computer science. The papers in this issue are the culmination of this 6-month challenge, and demonstrate that data integration and multidisciplinary collaboration can indeed yield novel approaches for handling large, complex datasets, and reveal new insight and relevance to a complex illness such as CFS.

Adult↗
PubMed2004

A method for performance evaluation using WeeFIM data collected for the Joint Commission on Accreditation of Healthcare Organizations' ORYX initiative: The 0.5 band control chart analysis.

This article describes the employment of a method of data analysis for detailed internal program evaluation, which we call the 0.5 Band Control Chart Analysis. We describe how the 0.5 Band Control Chart Analysis can be used in conjunction with the data collected and analyzed as part of the Joint Commission on Accreditation of Healthcare Organizations' ORYX initiative to enhance program evaluation. How this procedure helped identify problems and drove performance improvement at our facility is also discussed.

Data Interpretation, Statistical↗
PubMed2000

The effect of mode of data collection and of non-response on reported alcohol consumption: a split-sample study in Switzerland.

AIMS: To examine (a) effects of different modes of data collection on the reporting of alcohol consumption and non-response rate, and (b) differences in reported consumption between respondents and non-respondents. DESIGN: Two versions of a health questionnaire survey were assigned to two random samples, one version to each sample. Version 1 consisted of a telephone interview without alcohol questions, followed by a mailed questionnaire with alcohol questions. Version 2 consisted of a telephone interview with alcohol questions, followed by a mailed questionnaire without alcohol questions. SETTING: Participants were recruited randomly in eight Swiss cantons. PARTICIPANTS: Five hundred and thirty-seven (404) respondents to the telephone interview (and subsequent mailed questionnaire) with version 1, and 451 (360) with version 2. MEASUREMENTS: Alcohol-use variables derived from a quantity-frequency measure. RESULTS: Respondents to the mailed questionnaire (version 2) did not differ significantly in alcohol consumption from non-respondents. Response rate was not affected by inclusion of alcohol questions, but respondents asked by telephone about their alcohol use were more often abstainers and less often hazardous drinkers than respondents to the mailed question. CONCLUSION: The study gives no indication that interviews are refused because alcohol consumption is a questionnaire topic, but suggests that postal questionnaires give slightly greater disclosure of alcohol consumption.

Adolescent↗
PubMed1987

Estimation of myocardial infarction mortality from routinely collected data in Western Australia.

The accuracy of routinely collected mortality data for ischemic heart disease (IHD) as indicators of death from acute myocardial infarction (AMI) was assessed in ages 25-64 years, according to the WHO criteria defined in 1983. Cases were identified from computer records (linked for individuals) of all death certificates and hospital discharges in Western Australia between 1971 and 1982. Where the official cause was IHD about 90% of deaths fulfilled the WHO criteria for definite or possible AMI. Up to 10% of fatal cases of definite or possible AMI were coded to other causes in the official death statistics, however it appeared that variations in this figure with changes in coding practices could cause appreciable bias in the estimation of secular trends in IHD mortality. This problem could largely be overcome by reviewing fatal events where the death certificate was coded to one of a limited number of other ICD rubrics.

Adult↗