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Where are persons with intellectual disabilities in medical research? A survey of published clinical trials.

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Title: Where are persons with intellectual disabilities in medical research? A survey of published clinical trials.
Authors: Feldman, M. A., Bosett, J., Collet, C., Burnham‐Riosa, P.
Source: Journal of Intellectual Disability Research. Sep2014, Vol. 58 Issue 9, p800-809. 10p. 2 Diagrams, 2 Charts.
Subjects: Clinical trials, Medical research, MEDLINE, People with intellectual disabilities, Online information services, Statistical sampling, World health, Systematic reviews, Inter-observer reliability, Human research subjects, Descriptive statistics
Abstract: Background Persons with intellectual disabilities (ID) are exposed to the same medical interventions as everyone else. Given the unique health profiles of many persons with ID, it cannot be assumed that they will react to medical treatments the same as persons without ID. It is not clear if medical clinical trials routinely include persons with ID. The purpose of this research survey was to examine the inclusion of persons with ID in medical research trials, and to determine whether accommodations and/or study modifications could have been made to promote greater inclusion in medical research. Method Three hundred randomised control and clinical trials published between 2007 and 2011 in the six highest impact medical journals were randomly selected. Each study was reviewed for inclusion of persons with ID, and possible accommodations that could have been put in place without compromising research integrity. Corresponding authors received a follow-up survey to determine whether persons with ID were included, but were not mentioned in the article. Results Only 6 (2%) of 300 randomly chosen studies clearly included persons with ID. Over 90% of studies were designed in ways that would automatically exclude persons with ID from participating. The author survey revealed three additional studies including persons with ID. Most persons with ID could have participated in at least 70% of the studies with simple accommodations and/or minor procedural modifications. Discussion The findings highlight the exclusion of persons with ID in medical research. Efforts are needed to increase inclusion through research policy initiatives and education. [ABSTRACT FROM AUTHOR]
Copyright of Journal of Intellectual Disability Research is the property of Wiley-Blackwell and its content may not be copied or emailed to multiple sites without the copyright holder's express written permission. Additionally, content may not be used with any artificial intelligence tools or machine learning technologies. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)
Database: Psychology and Behavioral Sciences Collection
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  Data: Where are persons with intellectual disabilities in medical research? A survey of published clinical trials.
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  Data: <searchLink fieldCode="JN" term="%22Journal+of+Intellectual+Disability+Research%22">Journal of Intellectual Disability Research</searchLink>. Sep2014, Vol. 58 Issue 9, p800-809. 10p. 2 Diagrams, 2 Charts.
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  Data: <searchLink fieldCode="DE" term="%22Clinical+trials%22">Clinical trials</searchLink><br /><searchLink fieldCode="DE" term="%22Medical+research%22">Medical research</searchLink><br /><searchLink fieldCode="DE" term="%22MEDLINE%22">MEDLINE</searchLink><br /><searchLink fieldCode="DE" term="%22People+with+intellectual+disabilities%22">People with intellectual disabilities</searchLink><br /><searchLink fieldCode="DE" term="%22Online+information+services%22">Online information services</searchLink><br /><searchLink fieldCode="DE" term="%22Statistical+sampling%22">Statistical sampling</searchLink><br /><searchLink fieldCode="DE" term="%22World+health%22">World health</searchLink><br /><searchLink fieldCode="DE" term="%22Systematic+reviews%22">Systematic reviews</searchLink><br /><searchLink fieldCode="DE" term="%22Inter-observer+reliability%22">Inter-observer reliability</searchLink><br /><searchLink fieldCode="DE" term="%22Human+research+subjects%22">Human research subjects</searchLink><br /><searchLink fieldCode="DE" term="%22Descriptive+statistics%22">Descriptive statistics</searchLink>
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  Data: Background Persons with intellectual disabilities (ID) are exposed to the same medical interventions as everyone else. Given the unique health profiles of many persons with ID, it cannot be assumed that they will react to medical treatments the same as persons without ID. It is not clear if medical clinical trials routinely include persons with ID. The purpose of this research survey was to examine the inclusion of persons with ID in medical research trials, and to determine whether accommodations and/or study modifications could have been made to promote greater inclusion in medical research. Method Three hundred randomised control and clinical trials published between 2007 and 2011 in the six highest impact medical journals were randomly selected. Each study was reviewed for inclusion of persons with ID, and possible accommodations that could have been put in place without compromising research integrity. Corresponding authors received a follow-up survey to determine whether persons with ID were included, but were not mentioned in the article. Results Only 6 (2%) of 300 randomly chosen studies clearly included persons with ID. Over 90% of studies were designed in ways that would automatically exclude persons with ID from participating. The author survey revealed three additional studies including persons with ID. Most persons with ID could have participated in at least 70% of the studies with simple accommodations and/or minor procedural modifications. Discussion The findings highlight the exclusion of persons with ID in medical research. Efforts are needed to increase inclusion through research policy initiatives and education. [ABSTRACT FROM AUTHOR]
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  Data: <i>Copyright of Journal of Intellectual Disability Research is the property of Wiley-Blackwell and its content may not be copied or emailed to multiple sites without the copyright holder's express written permission. Additionally, content may not be used with any artificial intelligence tools or machine learning technologies. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract.</i> (Copyright applies to all Abstracts.)
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        Value: 10.1111/jir.12091
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      – SubjectFull: Inter-observer reliability
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              Text: Sep2014
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