Cargando…
Recruiting to preclinical Alzheimer's disease clinical trials through registries
Participant registries are repositories of individuals who have expressed willingness to learn about studies for which they may be eligible. Registries are increasingly being used to improve recruitment to preclinical Alzheimer's disease (AD) clinical trials, which require large screening effor...
Autor principal: | |
---|---|
Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
Elsevier
2017
|
Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5399544/ https://www.ncbi.nlm.nih.gov/pubmed/28439532 http://dx.doi.org/10.1016/j.trci.2017.02.004 |
_version_ | 1783230659634921472 |
---|---|
author | Grill, Joshua D. |
author_facet | Grill, Joshua D. |
author_sort | Grill, Joshua D. |
collection | PubMed |
description | Participant registries are repositories of individuals who have expressed willingness to learn about studies for which they may be eligible. Registries are increasingly being used to improve recruitment to preclinical Alzheimer's disease (AD) clinical trials, which require large screening efforts to identify adequate numbers of participants who meet enrollment criteria. Recruiting to preclinical AD trials from registries is made more efficient through registry collection of data that permits exclusion of those who will not be eligible and identifies individuals most likely to qualify for trials. Such data could include self-reported disease family history or other risk factors but could also include cognitive, genetic, or biomarker testing outcomes. Few data are available to guide investigators overseeing registries and important ethical questions are likely to arise related to their conduct, especially in registries collecting AD risk information. This article outlines three areas of consideration for registry investigators: informed consent, disclosure, and sponsorship. |
format | Online Article Text |
id | pubmed-5399544 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2017 |
publisher | Elsevier |
record_format | MEDLINE/PubMed |
spelling | pubmed-53995442017-10-24 Recruiting to preclinical Alzheimer's disease clinical trials through registries Grill, Joshua D. Alzheimers Dement (N Y) Perspective Participant registries are repositories of individuals who have expressed willingness to learn about studies for which they may be eligible. Registries are increasingly being used to improve recruitment to preclinical Alzheimer's disease (AD) clinical trials, which require large screening efforts to identify adequate numbers of participants who meet enrollment criteria. Recruiting to preclinical AD trials from registries is made more efficient through registry collection of data that permits exclusion of those who will not be eligible and identifies individuals most likely to qualify for trials. Such data could include self-reported disease family history or other risk factors but could also include cognitive, genetic, or biomarker testing outcomes. Few data are available to guide investigators overseeing registries and important ethical questions are likely to arise related to their conduct, especially in registries collecting AD risk information. This article outlines three areas of consideration for registry investigators: informed consent, disclosure, and sponsorship. Elsevier 2017-03-14 /pmc/articles/PMC5399544/ /pubmed/28439532 http://dx.doi.org/10.1016/j.trci.2017.02.004 Text en © 2017 The Author http://creativecommons.org/licenses/by-nc-nd/4.0/ This is an open access article under the CC BY-NC-ND license (http://creativecommons.org/licenses/by-nc-nd/4.0/). |
spellingShingle | Perspective Grill, Joshua D. Recruiting to preclinical Alzheimer's disease clinical trials through registries |
title | Recruiting to preclinical Alzheimer's disease clinical trials through registries |
title_full | Recruiting to preclinical Alzheimer's disease clinical trials through registries |
title_fullStr | Recruiting to preclinical Alzheimer's disease clinical trials through registries |
title_full_unstemmed | Recruiting to preclinical Alzheimer's disease clinical trials through registries |
title_short | Recruiting to preclinical Alzheimer's disease clinical trials through registries |
title_sort | recruiting to preclinical alzheimer's disease clinical trials through registries |
topic | Perspective |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5399544/ https://www.ncbi.nlm.nih.gov/pubmed/28439532 http://dx.doi.org/10.1016/j.trci.2017.02.004 |
work_keys_str_mv | AT grilljoshuad recruitingtopreclinicalalzheimersdiseaseclinicaltrialsthroughregistries |