BACKGROUND: The Alzheimer Prevention Trials (APT) Webstudy is the first stage in establishing a Trial-ready Cohort for Preclinical and Prodromal Alzheimer's disease (TRC-PAD). This paper describes recruitment approaches for the APT Webstudy. OBJECTIVES: To remotely enroll a cohort of individuals into a web-based longitudinal observational study. Participants are followed quarterly with brief cognitive and functional assessments, and referred to Sites for in-clinic testing and biomarker confirmation prior to enrolling in the Trial-ready Cohort (TRC). DESIGN: Participants are referred to the APT Webstudy from existing registries of individuals interested in brain health and Alzheimer's disease research, as well as through central and site recruitment efforts. The study team utilizes Urchin Tracking Modules (UTM) codes to better understand the impact of electronic recruitment methods. SETTING: A remotely enrolled online study. PARTICIPANTS: Volunteers who are at least 50 years old and interested in Alzheimer's research. MEASUREMENTS: Demographics and recruitment source of participant where measured by UTM. RESULTS: 30,650 participants consented to the APT Webstudy as of April 2020, with 69.7% resulting from referrals from online registries. Emails sent by the registry to participants were the most effective means of recruitment. Participants are distributed across the US, and the demographics of the APT Webstudy reflect the referral registries, with 73.1% female, 85.0% highly educated, and 92.5% Caucasian. CONCLUSIONS: We have demonstrated the feasibility of enrolling a remote web-based study utilizing existing registries as a primary referral source. The next priority of the study team is to engage in recruitment initiatives that will improve the diversity of the cohort, towards the goal of clinical trials that better represent the US population.
BACKGROUND: The Alzheimer Prevention Trials (APT) Webstudy is the first stage in establishing a Trial-ready Cohort for Preclinical and Prodromal Alzheimer's disease (TRC-PAD). This paper describes recruitment approaches for the APT Webstudy. OBJECTIVES: To remotely enroll a cohort of individuals into a web-based longitudinal observational study. Participants are followed quarterly with brief cognitive and functional assessments, and referred to Sites for in-clinic testing and biomarker confirmation prior to enrolling in the Trial-ready Cohort (TRC). DESIGN:Participants are referred to the APT Webstudy from existing registries of individuals interested in brain health and Alzheimer's disease research, as well as through central and site recruitment efforts. The study team utilizes Urchin Tracking Modules (UTM) codes to better understand the impact of electronic recruitment methods. SETTING: A remotely enrolled online study. PARTICIPANTS: Volunteers who are at least 50 years old and interested in Alzheimer's research. MEASUREMENTS: Demographics and recruitment source of participant where measured by UTM. RESULTS: 30,650 participants consented to the APT Webstudy as of April 2020, with 69.7% resulting from referrals from online registries. Emails sent by the registry to participants were the most effective means of recruitment. Participants are distributed across the US, and the demographics of the APT Webstudy reflect the referral registries, with 73.1% female, 85.0% highly educated, and 92.5% Caucasian. CONCLUSIONS: We have demonstrated the feasibility of enrolling a remote web-based study utilizing existing registries as a primary referral source. The next priority of the study team is to engage in recruitment initiatives that will improve the diversity of the cohort, towards the goal of clinical trials that better represent the US population.
Authors: Jessica B Langbaum; Jason Karlawish; J Scott Roberts; Elisabeth M Wood; Angela Bradbury; Nellie High; Trisha L Walsh; David Gordon; Raj Aggarwal; Peter Davis; Carter Stowell; Lane Trisko; Carolyn M Langlois; Eric M Reiman; Pierre N Tariot Journal: Alzheimers Dement Date: 2019-02-13 Impact factor: 21.566
Authors: Keith N Fargo; Maria C Carrillo; Michael W Weiner; William Z Potter; Zaven Khachaturian Journal: Alzheimers Dement Date: 2016-11 Impact factor: 21.566
Authors: Rennie Russo; David Coultas; Jamile Ashmore; Jennifer Peoples; John Sloan; Bradford E Jackson; Minyong Uhm; Karan P Singh; Steven N Blair; Sejong Bae Journal: Contemp Clin Trials Date: 2015-02-03 Impact factor: 2.226
Authors: Ginette Thibault-Halman; Carly S Rivers; Christopher S Bailey; Eve C Tsai; Brian Drew; Vanessa K Noonan; Michael G Fehlings; Marcel F Dvorak; Dilinuer Kuerban; Brian K Kwon; Sean D Christie Journal: J Neurotrauma Date: 2016-10-24 Impact factor: 5.269
Authors: Alexander Hein; Paul Gass; Christina Barbara Walter; Florin-Andrei Taran; Andreas Hartkopf; Friedrich Overkamp; Hans-Christian Kolberg; Peyman Hadji; Hans Tesch; Johannes Ettl; Rachel Wuerstlein; Debra Lounsbury; Michael P Lux; Diana Lüftner; Markus Wallwiener; Volkmar Müller; Erik Belleville; Wolfgang Janni; Tanja N Fehm; Diethelm Wallwiener; Thomas Ganslandt; Matthias Ruebner; Matthias W Beckmann; Andreas Schneeweiss; Peter A Fasching; Sara Y Brucker Journal: Breast Cancer Res Treat Date: 2016-06-09 Impact factor: 4.872
Authors: Joshua D Grill; Dan Hoang; Daniel L Gillen; Chelsea G Cox; Adrijana Gombosev; Kirsten Klein; Steve O'Leary; Megan Witbracht; Aimee Pierce Journal: J Alzheimers Dis Date: 2018 Impact factor: 4.472
Authors: P S Aisen; R A Sperling; J Cummings; M C Donohue; O Langford; G A Jimenez-Maggiora; R A Rissman; M S Rafii; S Walter; T Clanton; R Raman Journal: J Prev Alzheimers Dis Date: 2020
Authors: Manuel Montero-Odasso; G Y Zou; Nellie Kamkar; Howard H Feldman; Sylvie Belleville; Howard Chertkow; Haakon B Nygaard; Surim Son; Mark Speechley Journal: Alzheimers Res Ther Date: 2022-07-11 Impact factor: 8.823
Authors: Van M Ta Park; Oanh L Meyer; Janice Y Tsoh; Alka M Kanaya; Marian Tzuang; Bora Nam; Quyen Vuong; Joon Bang; Ladson Hinton; Dolores Gallagher-Thompson; Joshua D Grill Journal: Alzheimers Dement Date: 2022-04-14 Impact factor: 16.655
Authors: Paul S Aisen; Gustavo A Jimenez-Maggiora; Michael S Rafii; Sarah Walter; Rema Raman Journal: Nat Rev Neurol Date: 2022-04-04 Impact factor: 44.711
Authors: G A Jimenez-Maggiora; S Bruschi; R Raman; O Langford; M Donohue; M S Rafii; R A Sperling; J L Cummings; P S Aisen Journal: J Prev Alzheimers Dis Date: 2020
Authors: S Walter; O G Langford; T B Clanton; G A Jimenez-Maggiora; R Raman; M S Rafii; E J Shaffer; R A Sperling; J L Cummings; P S Aisen Journal: J Prev Alzheimers Dis Date: 2020
Authors: P S Aisen; R A Sperling; J Cummings; M C Donohue; O Langford; G A Jimenez-Maggiora; R A Rissman; M S Rafii; S Walter; T Clanton; R Raman Journal: J Prev Alzheimers Dis Date: 2020