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What do families think about genetic testing? new study seeks answers

NCT ID NCT02814747

Knowledge-focused Sponsor: Centre Hospitalier Universitaire Dijon Source: ClinicalTrials.gov ↗

What the study statuses mean

This study's is highlighted.

Recruitment status, easiest to join first

Recruiting now
This trial is taking on new participants right now.
Not yet recruiting
Registered, but not yet taking participants.
By invitation only
Not open to general applications. Only people the study team invites can take part.
Paused
Paused for now. It may or may not start again.
Ongoing
Running, but no longer taking on new participants.
Completed This study
The trial has finished. Results may not be published yet.
Stopped early
Stopped early, before it reached the end. That can be for many reasons, including safety.
Cancelled
Cancelled before anyone took part.

Expanded access (not trials)

Expanded access
Not a trial. This treatment can be requested outside a study, case by case, for people who qualify.
Expanded access (paused)
Not a trial. The treatment can normally be requested outside a study, but is unavailable right now.
Expanded access (ended)
Not a trial. The treatment could once be requested outside a study, but no longer can.
Approved
The treatment has been approved, so it is available normally rather than through this programme.

When the status isn't known

Details not published
The full record has not been published yet, so there is little to show here.
Status unknown
This status has not been confirmed recently, so it may be out of date.

First seen Jun 27, 2026 · Last updated Jun 27, 2026

Summary

This completed study from France involved 530 families of children with rare developmental disorders. Researchers used surveys and interviews to understand how families feel about high-throughput genetic sequencing, including unexpected findings. The goal is to improve how doctors inform and obtain consent from families before using these advanced genetic tests.

What this could mean

Our plain-language read of the trial. This is informational only, not medical advice or a prediction.

What this could lead to
If successful, this research could help doctors better explain genetic tests to families and improve how consent is obtained for advanced sequencing.
What could go wrong
This is an observational study, not a treatment trial. It gathers opinions and experiences, so it won't directly change medical care or outcomes.

This is an AI summary of the original study and may miss details. Read our disclaimer.

Study facts

What this study's own registry entry says, in plain language.

Phase

Not a phased trial

Phase numbers describe drug development. The registry uses this when they do not apply, as it does for trials of devices, procedures or behaviour changes, and for observational studies.

Participants

About 530 people

The number the study aims to enrol. It can still change while the study runs.

Lead sponsor

Other sponsor

The registry's catch-all category, for sponsors it does not file as a company, a government agency, or a research network.

Who can take part

This study's own entry requirements. Only the study team can say for certain whether you qualify.

Ages

Children (under 18), adults (18 to 64) and older adults (65 and over)

Sex

Anyone

Healthy volunteers

Not accepted

This study is not open to healthy volunteers. The entry requirements below say who it is open to.

Show the full entry requirements

Copied word for word from the study's registry entry, so the wording is the study team's rather than ours.

Quantitative study * INCLUSION CRITERIA * parents of patients with development anomaly and/or intellectual deficiency with no etiological diagnosis * parents of patients consulting at the centres of reference in Dijon or Lyon * parents of patients who have not already benefited from HTS * parents of patients who are fluent in French * NON-INCLUSION CRITERIA * persons without national health insurance cover * inability to answer the questionnaires Qualitative study * INCLUSION CRITERIA * persons who have provided written informed consent * parents of patients with a development anomaly * parents of patients consulting at the centres of reference in Dijon or Lyon * parents of patients who have already benefited from HTS for diagnostic purposes * persons fluent in French * NON-INCLUSION CRITERIA * persons without national health insurance cover * cognitive impairment making it impossible for the person to understand the aims of the study

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Conditions

The condition(s) this trial relates to.

Rare Diseases

As listed by the trial registrant

The condition terms exactly as the trial's registrant entered them.

Rare diseases

Contacts and locations

Locations

  • CHU Dijon Bourgogne

    Dijon, 21079, France

More trials for these conditions

Other studies related to the condition(s) this trial covers.