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NCT00339508 · ClinicalTrials.gov registry record
Exploratory Data Analysis for Disease Pedigrees and Cancer Genetics
A clinical trial, sponsored by National Human Genome Research Institute (NHGRI).
- Completed
- Registry status
- 13,385
- Enrollment target
NCT00339508 is a clinical trial that has completed, run by National Human Genome Research Institute (NHGRI). The registered enrollment target is 13,385 participants.
The verdict
NCT00339508 has completed, sponsored by National Human Genome Research Institute (NHGRI).
- COMPLETED
- Registry status
- 13,385 participants
- Enrollment target
Study Summary
The researchers have developed and distributed several software packages for pedigree analysis (FAST, CASPAR, PedHunter, IIC) and cancer genetics (oncotree, METREX). Users who need assistance with the software or who want to see new features added often send the researchers data files that include human data. The information is normally coded, and the researchers do not have access to the identification of the people whose information is in the files. Sometimes the content of the files gives rise to collaborations between the software developers and the providers of the files. Because concerns over the confidentiality of medical information have increased significantly over the past few years, the researchers must apply for exemptions from detailed ethics committee oversight for every data set they receive. This process is cumbersome and makes it difficult to assist software users. The amount of information required to apply for an exemption also poses a barrier to collaborations. A full protocol will subject all data sets to ethics committee oversight without the need for individual exemption requests, enabling the researchers to assist users with software problems and to collaborate with other researchers. From January 1, 2000, through December 15, 2001, the researchers received 71 requests for assistance, 19 of which included data files. None of the data files had any names or patient identifiers. Of these 19, in 8 cases the researchers sent back modified output files. In two of these eight cases, the researchers could see results of research interest; one of them concerned human data. In 2 of the 19 cases, the researchers sent back modified input files; in one such case, they established a collaboration with the originator of the files. In sum, most requests come under the heading of customer service, with no research contents. A few, however, do lead to research results or collaborations, for which ethics committee oversight is required. Over the three-year
Trial Details
| Field | Value |
|---|---|
| Enrollment Target | 13,385 participants |
| Start Date | 2002-03-19 |
| Est. Completion | 2017-05-09 |
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Full Details on ClinicalTrials.gov ↗What the Registry Record Tells You About NCT00339508
The ClinicalTrials.gov registry entry for NCT00339508 describes a study currently listed as completed, categorized as an unspecified phase. The registered enrollment target is 13,385 participants, a figure that helps gauge the scale of data the investigators plan to collect. The listed sponsor is National Human Genome Research Institute (NHGRI), which has 185 total studies on file at ClinicalTrials.gov.
The record links to 0 conditions, and to 0 interventions.
NCT00339508 reports 0 study locations.
Frequently Asked Questions
What is clinical trial NCT00339508 about?
NCT00339508 is a clinical study titled "Exploratory Data Analysis for Disease Pedigrees and Cancer Genetics". The researchers have developed and distributed several software packages for pedigree analysis (FAST, CASPAR, PedHunter, IIC) and cancer genetics (oncotree, METREX). Users who need assistance with the software or who want to see new features added often send the researchers data files that include h...
What is the current status of trial NCT00339508?
This trial is currently completed. The enrollment target is 13,385 participants. The study started on 2002-03-19. Estimated completion is 2017-05-09.
Who is sponsoring clinical trial NCT00339508?
This trial is sponsored by National Human Genome Research Institute (NHGRI), which has 185 total clinical trials registered on ClinicalTrials.gov.
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