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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