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Alzheimer's Prevention Registry: A Program to Accelerate Enrollment Into Studies (APR)

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ClinicalTrials.gov Identifier: NCT02022943
Recruitment Status : Recruiting
First Posted : December 30, 2013
Last Update Posted : July 20, 2022
Sponsor:
Information provided by (Responsible Party):
Jessica Langbaum, PhD, Banner Health

Tracking Information
First Submitted Date December 23, 2013
First Posted Date December 30, 2013
Last Update Posted Date July 20, 2022
Study Start Date May 2012
Estimated Primary Completion Date January 2030   (Final data collection date for primary outcome measure)
Current Primary Outcome Measures
 (submitted: December 30, 2013)		 Number of individuals enrolled into Alzheimer's prevention studies [ Time Frame: 16 years ]
Original Primary Outcome Measures
 (submitted: December 23, 2013)		 Enrollment into prevention research studies [ Time Frame: 16 years ]
Change History
Current Secondary Outcome Measures
 (submitted: December 30, 2013)		 Number of individuals referred to Alzheimer's prevention research studies / sites [ Time Frame: 16 years ]
Original Secondary Outcome Measures
 (submitted: December 23, 2013)		 Referral into prevention research studies [ Time Frame: 16 years ]
Current Other Pre-specified Outcome Measures
 (submitted: December 30, 2013)		 Total number enrolled into the Alzheimer's Prevention Registry [ Time Frame: 16 years ]
Original Other Pre-specified Outcome Measures
 (submitted: December 23, 2013)		 Awareness of prevention research studies [ Time Frame: 16 years ]
 
Descriptive Information
Brief Title Alzheimer's Prevention Registry: A Program to Accelerate Enrollment Into Studies
Official Title Alzheimer's Prevention Registry
Brief Summary The Alzheimer's Prevention Registry (www.endALZnow.org) will collect contact and demographic information on individuals. The objective is to provide information the latest news and advances in Alzheimer's prevention research, and to inform enrollees about research studies in their community. Enrolled individuals will receive regular email communications. As research studies become available, individuals will be notified via email with information as to how proceed should they be interested. Registry enrollees are under no obligation to participate in a research study. Study opportunities may include surveys, healthy lifestyle interventions (e.g., diet, exercise), memory & thinking tests, brain scans, and investigational drug trials. To join the Registry, please visit www.endALZnow.org
Detailed Description Not Provided
Study Type Observational [Patient Registry]
Study Design Observational Model: Other
Time Perspective: Other
Target Follow-Up Duration 20 Years
Biospecimen Not Provided
Sampling Method Non-Probability Sample
Study Population Anyone who meets entry criteria is eligible to join the Registry. We anticipate 250,000 individuals will join.
Condition
  • Alzheimer's Disease
  • Dementia
Intervention Not Provided
Study Groups/Cohorts Not Provided
Publications * Langbaum JB, High N, Nichols J, Kettenhoven C, Reiman EM, Tariot PN. The Alzheimer's Prevention Registry: A Large Internet-Based Participant Recruitment Registry to Accelerate Referrals to Alzheimer's-Focused Studies. J Prev Alzheimers Dis. 2020;7(4):242-250. doi: 10.14283/jpad.2020.31.

*   Includes publications given by the data provider as well as publications identified by ClinicalTrials.gov Identifier (NCT Number) in Medline.
 
Recruitment Information
Recruitment Status Recruiting
Estimated Enrollment
 (submitted: November 18, 2016)		 500000
Original Estimated Enrollment
 (submitted: December 23, 2013)		 250000
Estimated Study Completion Date January 2030
Estimated Primary Completion Date January 2030   (Final data collection date for primary outcome measure)
Eligibility Criteria

Inclusion Criteria:

  • Must be able to accept the Alzheimer's Prevention Registry website terms and conditions

Exclusion Criteria:

  • None
Sex/Gender
Sexes Eligible for Study: All
Ages 18 Years to 110 Years   (Adult, Older Adult)
Accepts Healthy Volunteers Yes
Contacts
Contact: Nellie High, MA 1-888-STOP-ALZ info@endALZnow.org
Listed Location Countries United States
Removed Location Countries  
 
Administrative Information
NCT Number NCT02022943
Other Study ID Numbers APR
Has Data Monitoring Committee No
U.S. FDA-regulated Product Not Provided
IPD Sharing Statement Not Provided
Current Responsible Party Jessica Langbaum, PhD, Banner Health
Original Responsible Party Jessica Langbaum, PhD, Banner Health, Associate Director
Current Study Sponsor Banner Health
Original Study Sponsor Jessica Langbaum, PhD
Collaborators Not Provided
Investigators
Principal Investigator: Jessica Langbaum, PhD Banner Alzheimer's Institute
PRS Account Banner Health
Verification Date July 2022