'What's in the NIDDK CDR?'--public query tools for the NIDDK central data repository.

The National Institute of Diabetes and Digestive Disease (NIDDK) Central Data Repository (CDR) is a web-enabled resource available to researchers and the general public. The CDR warehouses clinical data and study documentation from NIDDK funded research, including such landmark studies as The Diabetes Control and Complications Trial (DCCT, 1983-93) and the Epidemiology of Diabetes Interventions and Complications (EDIC, 1994-present) follow-up study which has been ongoing for more than 20 years. The CDR also houses data from over 7 million biospecimens representing 2 million subjects. To help users explore the vast amount of data stored in the NIDDK CDR, we developed a suite of search mechanisms called the public query tools (PQTs). Five individual tools are available to search data from multiple perspectives: study search, basic search, ontology search, variable summary and sample by condition. PQT enables users to search for information across studies. Users can search for data such as number of subjects, types of biospecimens and disease outcome variables without prior knowledge of the individual studies. This suite of tools will increase the use and maximize the value of the NIDDK data and biospecimen repositories as important resources for the research community. Database URL: https://www.niddkrepository.org/niddk/home.do.

The NIDDK Central Repository at 8 years--ambition, revision, use and impact.

The National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) Central Repository makes data and biospecimens from NIDDK-funded research available to the broader scientific community. It thereby facilitates: the testing of new hypotheses without new data or biospecimen collection; pooling data across several studies to increase statistical power; and informative genetic analyses using the Repository's well-curated phenotypic data. This article describes the initial database plan for the Repository and its revision using a simpler model. Among the lessons learned were the trade-offs between the complexity of a database design and the costs in time and money of implementation; the importance of integrating consent documents into the basic design; the crucial need for linkage files that associate biospecimen IDs with the masked subject IDs used in deposited data sets; and the importance of standardized procedures to test the integrity data sets prior to distribution. The Repository is currently tracking 111 ongoing NIDDK-funded studies many of which include genotype data, and it houses over 5 million biospecimens of more than 25 types including serum, plasma, stool, urine, DNA, red blood cells, buffy coat and tissue. Repository resources have supported a range of biochemical, clinical, statistical and genetic research (188 external requests for clinical data and 31 for biospecimens have been approved or are pending). Genetic research has included GWAS, validation studies, development of methods to improve statistical power of GWAS and testing of new statistical methods for genetic research. We anticipate that the future impact of the Repository's resources on biomedical research will be enhanced by (i) cross-listing of Repository biospecimens in additional searchable databases and biobank catalogs; (ii) ongoing deployment of new applications for querying the contents of the Repository; and (iii) increased harmonization of procedures, data collection strategies, questionnaires etc. across both research studies and within the vocabularies used by different repositories.

Impact of T-ACASI on Survey Measurements of Subjective Phenomena.

Numerous studies have shown that audio-computer-assisted self-interviewing (audio-CASI) and telephone audio-CASI (T-ACASI) technologies yield increased reporting of sensitive and stigmatized objective phenomena such as sexual and drug use behaviors. Little attention has been given, however, to the impact of these technologies on the measurement of subjective phenomena (attitudes, opinions, feelings, etc.). This article reports results for the seven subjective measurements included in the National STD and Behavior Measurement Experiment (NSBME). NSBME drew probability samples of USA and Baltimore adults (Ns = 1,543 and 744, respectively) and randomized these respondents to be interviewed by T-ACASI or telephone interviewer-administered questioning (T-IAQ). Response distributions for all subjective measurements obtained by T-ACASI diverge from those obtained by human telephone interviewers. For six of our seven ordinal-scaled measurements, this divergence involved shifting responses directionally along the ordinal scale, as opposed to a nondirectional redistribution among response categories. When interviewed by T-ACASI, respondents were more supportive of traditional gender roles and corporal punishment, less supportive of integrated neighborhoods and same-gender sex, and more likely to agree that occasional marijuana use is harmless and to describe themselves as attractive. The majority of these results suggest that telephone survey respondents may provide more "tolerant" and "socially liberal" responses to human interviewers than to a T-ACASI computer. Similarly, although the evidence is not entirely consistent, the impact of T-ACASI appears to increase with the social vulnerability of the population surveyed.