NCT02255825

Brief Summary

To gain knowledge about how patients undergoing prenatal diagnosis for a fetal abnormality understand and react to Whole Genome Sequencing (WGS) testing, so that the investigators can develop more ethical and responsible approach to patient education, counseling, and return of results for patients.

Trial Health

30
At Risk

Trial Health Score

Automated assessment based on enrollment pace, timeline, and geographic reach

Trial has exceeded expected completion date
Timeline
Completed

Started Oct 2014

Longer than P75 for not_applicable

Geographic Reach
1 country

1 active site

Status
withdrawn

Health score is calculated from publicly available data and should be used for screening purposes only.

Trial Relationships

Click on a node to explore related trials.

Study Timeline

Key milestones and dates

First Submitted

Initial submission to the registry

September 24, 2014

Completed
7 days until next milestone

Study Start

First participant enrolled

October 1, 2014

Completed
2 days until next milestone

First Posted

Study publicly available on registry

October 3, 2014

Completed
4.7 years until next milestone

Primary Completion

Last participant's last visit for primary outcome

June 4, 2019

Completed
Same day until next milestone

Study Completion

Last participant's last visit for all outcomes

June 4, 2019

Completed
Last Updated

June 6, 2019

Status Verified

June 1, 2019

Enrollment Period

4.7 years

First QC Date

September 24, 2014

Last Update Submit

June 4, 2019

Conditions

Outcome Measures

Primary Outcomes (2)

  • Change in maternal mood (focused on assessment of depression)

    Compare mood measured by EPDS between enrollment and 3 months after completion of pregnancy

    At enrollment and 3 months after completion of pregnancy (expected to be 8 months after enrollment)

  • Change in paternal mood (focused on assessment of depression)

    Compare mood measured by EPDS between enrollment and 3 months after completion of pregnancy

    At enrollment and 3 months after completion of pregnancy (expected to be 8 months after enrollment)

Secondary Outcomes (2)

  • Change in maternal mood (focused on assessment of anxiety)

    At enrollment and 3 months after completion of pregnancy (expected to be 8 months after enrollment)

  • Change in paternal mood (focused on assessment of anxiety)

    At enrollment and 3 months after completion of pregnancy (expected to be 8 months after enrollment)

Study Arms (2)

Control Group

ACTIVE COMPARATOR

Amniocentesis will be performed, Whole Genome Sequencing will not be performed, and psychosocial assessment will be performed.

Procedure: AmniocentesisOther: Psychosocial assessment

Intervention Group

EXPERIMENTAL

Amniocentesis will be performed, Whole Genome Sequencing will be performed if the karyotype is normal, and psychosocial assessment will be performed.

Genetic: Whole Genome SequencingProcedure: AmniocentesisOther: Psychosocial assessment

Interventions

Whole genome sequencing in a CLIA lab and return of results.

Intervention Group
AmniocentesisPROCEDURE

Note: this is being performed on all subjects as a clinical (not research) procedure

Control GroupIntervention Group

Use of EPDS and STAI for assessment of maternal and paternal mood

Control GroupIntervention Group

Eligibility Criteria

Age18 Years+
Sexall
Healthy VolunteersYes
Age GroupsAdult (18-64), Older Adult (65+)

You may qualify if:

  • Subject(s) 18 years or older (both mom and father of baby (FOB)
  • Subject is undergoing prenatal testing for a major fetal anomaly

You may not qualify if:

  • Mothers or fathers of the affected fetus are under the age of 18 years

Contact the study team to confirm eligibility.

Sponsors & Collaborators

Study Sites (1)

UCSD Health Sciences, Fetal Care and Genetics

San Diego, California, 92121, United States

Location

MeSH Terms

Interventions

Whole Genome SequencingAmniocentesisPsychiatric Rehabilitation

Intervention Hierarchy (Ancestors)

Sequence Analysis, DNASequence AnalysisGenetic TechniquesInvestigative TechniquesCytodiagnosisCytological TechniquesClinical Laboratory TechniquesDiagnostic Techniques and ProceduresDiagnosisParacentesisSpecimen HandlingPrenatal DiagnosisDiagnostic Techniques, Obstetrical and GynecologicalPuncturesSurgical Procedures, OperativeRehabilitationTherapeuticsHealth ServicesHealth Care Facilities Workforce and Services
0

Study Design

Study Type
interventional
Phase
not applicable
Allocation
NON RANDOMIZED
Masking
NONE
Purpose
OTHER
Intervention Model
PARALLEL
Sponsor Type
OTHER
Responsible Party
PRINCIPAL INVESTIGATOR
PI Title
MD/PhD

Study Record Dates

First Submitted

September 24, 2014

First Posted

October 3, 2014

Study Start

October 1, 2014

Primary Completion

June 4, 2019

Study Completion

June 4, 2019

Last Updated

June 6, 2019

Record last verified: 2019-06

Locations