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CompletedNCT04303624Updated Mar 11, 2020

Understanding Family Refusal

An observational study in Brain Death and Renal Failure, sponsored by Yale-NUS College. Completed. Open to female participants aged 21 Years and older, including healthy volunteers. Per ClinicalTrials.gov, last updated 2020-03-11.

Sponsored by Yale-NUS College · Observational

Study type
Observational
Model
Cohort
Time perspective
Cross-sectional
Enrollment
1,007
Ages
21 Years and older
Sex
Female
01

Study summary

The investigators plan a secondary data analysis of an existing dataset to examine how individual decision-making differs from family decision-making in organ donation.

02

Conditions studied

  • Brain Death
  • Renal Failure

Keywords

  • Organ donation
  • Transplantation
  • Intensive care
03

In context

Brain Death

74 studies on the registry are indexed under Brain Death; 10 are open to participants now.

This study's enrollment of 1,007 is above the median of 80 across 33 observational studies indexed under Brain Death.

Browse Brain Death studies →

Lead sponsor

Yale-NUS College is the lead sponsor of 29 studies on the registry; 2 are open to participants now.

Counted across the registry records on this site, refreshed daily.

04

Who can participate

Ages eligible
21 Years and older
Sexes eligible
Female
Accepts healthy volunteers
Yes
Sampling method
Non-probability sample

Study population

Participants were a representative sample of Singapore's population, approached via door-to-door recruitment and via community eateries.

Go through the criteria one by one — yes, no or not sure — and take the list to your doctor or the study team. Kept in this browser only.

Inclusion criteria

  • Citizens or permanent residents of Singapore
  • Above 21

Exclusion criteria

Exclusion Criteria:

  • Below 21
05

Study design

Observational model
Cohort
Time perspective
Cross-sectional
Enrollment
1,007 participants (actual)
Patient registry
No

Groups and cohorts

  • Community sample

    Representative sample of the Singapore population

    Other: Health sciences survey

Interventions

  • OtherHealth sciences survey

    Large scale demographic survey evaluating attitudes of population towards organ donation for the self vs. family

06

What researchers measure

Primary outcomes

  1. Willingness to donate

    Participants indicated their willingness to donate their own organs and those of a close family member

    Time frame: Single measurement (time of taking the survey)

Secondary outcomes

  1. Confidence in family decision-making

    Participants rated how confident they were that - upon their family member's death - they would respect their family member's views regarding donation rated using 5-point scales anchored on one end with 1="Not confident at all" and 5="Absolutely confident").

    Time frame: Single measurement (time of taking the survey)

07

Study locations

No study locations are listed for this record.

08

References and documents

Individual participant data

Plan to share: No — Due to stipulations by the Institutional Review Board, there is no data that can be shared.

No publications or documents are linked to this record.

09

Timeline

Tracking since Sep 25, 2026
ElapsedEstimatedEstimated, not yet reached

Ran from Sep 2016 to primary completion in Mar 2019, 30 months.

How these figures are worked out, and which studies are left out of them.

Registered
Mar 8, 2020
First posted
Mar 11, 2020
StartActual
Sep 1, 2016
Primary completionActual
Mar 31, 2019
CompletionActual
Mar 31, 2019
Last update
Mar 11, 2020
What these dates mean
Start.
When the first participant enrolled; while estimated, when the study expects to open to recruitment.
Primary completion.
When the last participant was examined or treated to collect data for the study's main question, its primary outcome. A study that stopped early gives the date its data collection stopped.
Completion.
When the last participant's last visit took place, for every outcome, secondary ones and side effects included: the end of the study. Often later than primary completion, sometimes the same day.
Actual and Est.
Actual means the registry says the date has happened. Est. (estimated) is a date the sponsor plans or expects. It can still move, and the sponsor is expected to change it to actual once it has passed.
No changes since tracking began. The registry record was last updated on Mar 11, 2020, before this site started recording changes on Sep 25, 2026. Its history is on ClinicalTrials.gov ↗
10

Registry details

Key details

Study ID
NCT04303624
Lead sponsor
Yale-NUS College
Responsible party
Jean Liu (Assistant Professor, Yale-NUS College) — Principal investigator
First posted
Mar 11, 2020
Start date
Sep 1, 2016
Primary completion
Mar 31, 2019
Completion
Mar 31, 2019
Last update
Mar 11, 2020

Oversight

Data monitoring committee
No
FDA-regulated drug
No
FDA-regulated device
No
View the source record on ClinicalTrials.gov ↗

Not currently enrolling

This study is completed, as verified in Mar 2020. You cannot join it, but the record below documents what was studied.

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Discussion

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