The Alzheimer's Prevention Registry: A Large Internet-Based Participant Recruitment Registry to Accelerate Referrals to Alzheimer's-Focused Studies.
The Alzheimer's Prevention Registry: A Large Internet-Based Participant Recruitment Registry to Accelerate Referrals to Alzheimer's-Focused Studies.
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DOI：
10.14283/jpad.2020.31
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发表时间：
2020
影响因子：
--
通讯作者：
Tariot PN
中科院分区：
文献类型：
--
作者：
Langbaum JB;High N;Nichols J;Kettenhoven C;Reiman EM;Tariot PN
由于公众缺乏对研究机会的认识以及研究的纳入和排除标准，以阿尔茨海默病（AD）为重点的研究，特别是预防研究的招募具有挑战性，导致高筛选失败率。开发一个基于互联网的参与者招募注册表，以高效和有效地提高对以AD为重点的研究机会的认识，并将潜在的合格志愿者与其社区的研究联系起来。18岁及以上的个人有资格加入阿尔茨海默氏症预防登记处（APR）。个人提供名字和姓氏，出生年份，国家和邮政编码加入APR;对于有关种族，种族，性别，AD或其他痴呆症家族史以及认知障碍诊断的问题，个人可以选择“不愿意回答”。APR网站保留了一份招募研究的列表，并在新研究可供招募时通过电子邮件联系选择的成员。截至2019年12月1日，346，661人加入了APR。成员的平均年龄为63.3岁（SD 11.7），主要是女性（75%）。94%的人认知功能未受损，50%的人报告有AD或其他痴呆症的家族史，在提供种族的人中，76%是白色。39%的人加入APR是因为付费的社交媒体广告。迄今为止，APR帮助招募了82项研究。APR是一个大型的，基于互联网的参与者招募登记处，旨在提高对AD预防研究的认识，并将成员与其社区的招募研究联系起来。它已证明有能力招募和吸引大量积极性很高的成员，并协助研究人员实现其招募目标。未来的出版物将报告APR加速招募和入组AD研究的有效性。
Recruitment for Alzheimer’s disease (AD)-focused studies, particularly prevention studies, is challenging due to the public’s lack of awareness about study opportunities coupled with studies’ inclusion and exclusion criteria, resulting in a high screen fail rate. To develop an internet-based participant recruitment registry for efficiently and effectively raising awareness about AD-focused study opportunities and connecting potentially eligible volunteers to studies in their communities. Individuals age 18 and older are eligible to join the Alzheimer’s Prevention Registry (APR). Individuals provide first and last name, year of birth, country, and zip/postal code to join the APR; for questions regarding race, ethnicity, sex, family history of AD or other dementia, and diagnosis of cognitive impairment, individuals have the option to select “prefer not to answer.” The APR website maintains a list of recruiting studies and contacts members who have opted in by email when new studies are available for enrollment. As of December 1, 2019, 346,661 individuals had joined the APR. Members had a mean age of 63.3 (SD 11.7) years and were predominately women (75%). 94% were cognitively unimpaired, 50% reported a family history of AD or other dementia, and of those who provided race, 76% were white. 39% joined the APR as a result of a paid social media advertisement. To date, the APR helped recruit for 82 studies. The APR is a large, internet-based participant recruitment registry designed to raise awareness about AD prevention research and connect members with enrolling studies in their communities. It has demonstrated the ability to recruit and engage a large number of highly motivated members and assist researchers in meeting their recruitment goals. Future publications will report on the effectiveness of APR for accelerating recruitment and enrollment into AD-focused studies.
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影响因子：
5.8
作者：
Schneider, L. S.
通讯作者：
Schneider, L. S.
影响因子：
14
作者：
通讯作者：
--
DOI：
10.7748/ns.30.39.38.s43
发表时间：
2016-05-25
影响因子：
--
作者：
Juaristi, Goiz-Eder Aspe;Dening, Karen Harrison
通讯作者：
Dening, Karen Harrison
DOI：
10.1016/j.jalz.2016.07.150
发表时间：
2017-01
期刊：
Alzheimer's & dementia : the journal of the Alzheimer's Association
影响因子：
--
作者：
Wimo A;Guerchet M;Ali GC;Wu YT;Prina AM;Winblad B;Jönsson L;Liu Z;Prince M
通讯作者：
Prince M
脑健康登记处：一个基于互联网的平台，用于神经科学研究参与者的招募、评估和纵向监测。
DOI：
10.1016/j.jalz.2018.02.021
发表时间：
2018-08
期刊：
Alzheimer's & dementia : the journal of the Alzheimer's Association
影响因子：
--
作者：
Weiner MW;Nosheny R;Camacho M;Truran-Sacrey D;Mackin RS;Flenniken D;Ulbricht A;Insel P;Finley S;Fockler J;Veitch D
通讯作者：
Veitch D