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Table 2 Characteristics of included studies

From: Participant retention practices in longitudinal clinical research studies with high retention rates

Study PI Study design Study population Target sample size Length of follow-up (months) Recruited sample size Retention (%) excluding mortality unless indicated Study duration
Longitudinal Study of the Ocular Complications of AIDS (LSOCA) [24, 25] Thorne Prospective Cohort Patients with acquired immunodeficiency syndrome 2800 60 2200 93% 1998–2012
Improving Care of Acute Lung Injury Patients (ICAP) [13, 18] Pronovost/Needham Prospective Cohort Patients with acute lung injury/acute respiratory distress syndrome 520 60 520 94% 2004–12
Longitudinal Study of Alzheimer’s Disease and Other Memory Disorders (LSADOMD) part of the National Institute on Aging’s Alzheimer’s Disease Research Centers [26] Lyketsos Prospective Cohort People ≥60y with or without memory problems 500 Until death 500 ≥80%c 1985-ongoing
Enroll Huntington’s Disease (Enroll-HD) [27] Ross Prospective Cohort Patients with Huntington’s Disease and their family members 2285 Until death 793 ≥80%c 2012-ongoing
Alzheimer’s Disease Anti-inflammatory Prevention Trial (ADAPT) [12] Lyketsos RCT Healthy elderly individual with a family history of Alzheimer’s Disease 2625 Average 20 2528 84%b 2000–04
Mr. Bean - The associations between HIV, early-stage kidney disease, and cardiovascular disease [28] Lucas Prospective Cohort People living with and without HIV 300 36 292 83%b 2010-ongoing
Active Surveillance of Prostate Cancera [16] Carter Prospective Cohort Men with suspected lower grade prostate cancer 10,000 216 1369 98% 2005-ongoing
Action for Health in Diabetes Continuation (Look AHEAD-C) [29] Clark RCT People living with chronic renal insufficiency 310 28 320 93% 2010-ongoing
Cohort Study to Determine Markers for the Development of Severe Vascular Events in Sclerodermad Hummers Prospective Cohort People living with scleroderma 300 72 300 99% 2006-ongoing
Longitudinal Study of various types of Fuch’s corneal dystrophy [30] Gottsch Prospective Cohort Fuch’s Corneal Dystrophy patients and family members Not provided Until death Not provided ≥80%c 2005-ongoing
Community Aging in Place Advancing Better Living for Elders (CAPABLE) [11] Szanton RCT Older adults aging in place 300 12 205 85% 2012-ongoing
Chronic Renal Insufficiency Cohort (CRIC) [20] Appel Prospective Cohort People living with chronic renal insufficiency 275 24 276 99% 2002-ongoing
Study of HIV Infection in the Etiology of Lung Disease (SHIELD) [31] Kirk Prospective Cohort General adult population 4000 >60 2200 ≥80%c 2009-ongoing
Early Detection and Predicting Recurrence in Non Small Cell Lung Cancera [32] Brock Prospective Cohort Non-small cell lung cancer patients 500 >60 581 ≥80%c 2007-ongoing
Early Markers of Alzheimer’s Disease in Selected BLSA Participants: Structural and Functional Brain Changes [33] Moghekar Prospective Cohort Older adults participating in the Baltimore Longitudinal Study of Aging - Until death 634 99%b 2010-ongoing
SHARE Project - Effectiveness of a Housing Intervention for Battered Women [15] Glass Quasi-experimental (pre/post) Victims of intimate partner violence 300 18 278 94% 2006–2010
ARDS Network Long Term Outcome Study (ALTOS) [17, 19] Needham RCT Patients with acute respiratory distress syndrome 922 12 922 94% 2008–2014
SPIROMICS - Sub-populations and intermediate outcome measures in COPD study [34] Hansel Prospective Cohort Chronic obstructive pulmonary disease patients 255 36 253 81%b 2010-ongoing
Internet Resource for Intervention and Safety (IRIS) [21] Glass RCT Victims of intimate partner violence 720 12 720 93%b 2011–2014
  1. Abbreviations: RCT randomized control trial
  2. aStudy embedded in clinic visits
  3. bIncludes mortality in denominator
  4. cActual retention rate could not be provided. At least 80% retention rate per response to screening questionnaire
  5. dNo citation available