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CompletedNCT07133789BionanoUpdated Nov 6, 2026

The Contribution of Optical Mapping to the Characterization of Chromosomal Rearrangements in Patients With Neurodevelopmental Disorders

An observational study in Anomalies Chromosome, sponsored by Assistance Publique - Hôpitaux de Paris. Completed at 1 site in France. Open to participants aged 2 Years and older, including healthy volunteers. Per ClinicalTrials.gov, last updated 2026-11-06.

Sponsored by Assistance Publique - Hôpitaux de Paris · Observational

Updated Nov 6, 2026Now CompletedEnrollment updated+2 moreGo to Updates ↓
Study type
Observational
Model
Cohort
Time perspective
Prospective
Enrollment
105
Ages
2 Years and older
Sex
All
01

Study summary

In neurodevelomental disorders, duplications are genomic variations that are difficult to interpret because their orientation cannot be defined by conventional techniques (ACPA and FISH). However, their orientation determines whether a gene disruption and potential loss of function can be validated or not. The same applies to complex chromosomal rearrangements that can involve duplications and deletions, the interpretation of which is made difficult by the limitations of conventional techniques. The Bionano technique is an optical cartography genomic method that will provide access to this information by specifying both balanced and unbalanced chromosomal anomalies, their genomic location, and orientation. Our study is a prospective and multicentric (N=4) study involving 35 patients with neurodevelopmental disorders (NDD) and carrying a chromosomal anomaly identified by chromosomal microarray analysis (ACPA). Depending on the genetic anomaly, patients will be divided into two groups: patients carrying duplications containing or interrupting a gene already implicated in neurodevelopmental disorders. Duplications may involve the X chromosome and be present in male patients. The other group will involve NDD patients with a more complex chromosomal rearrangement (combination of deletion and duplication, ring chromosome structure, combination of multiple genomic imbalances). The optical genomic mapping (OGM) technology developed by Bionano Genomics is an innovative whole-genome exploration technology that enables the identification of balanced or unbalanced structural variants. OGM is based on specific labeling of repetitive regions following extraction of high molecular weight DNA (fragments ranging from 100kb to 2Mb). The algorithms associated with this new technology allow the identification of balanced structural rearrangements as small as 500bp and unbalanced rearrangements as small as 5kb. This technique also enables the physical localization of each analyzed region, characterizing insertions, deletions, duplications, repeat expansions, inversions, and translocations.

Finally, in the first group, this technology is expected to allow us to characterize the breakpoints and orientation of duplicated segments in order to better understand the functional impact on the interrupted gene. Indeed, duplication can result in obtaining a complete additional copy of the gene, disrupt the gene leading to its misregulation (equivalent to a loss-of-function variation), disrupt another gene if the duplicated segment is inserted elsewhere in the genome or if it involves a regulatory region, or have no effect on gene expression. Similarly, in the second group, this technique will allow us to characterize the complex chromosomal rearrangement at the molecular level and define its functional impact.

This technology will enable us to better understand the pathophysiology of pediatric neurodevelopmental disorders (NDD) and guide the genetic counseling provided to the patient and their family. Furthermore, more generally, the results will help us better understand the complex architecture of neurodevelopmental disorders, ultimately allowing for more targeted therapeutic solutions. Finally, our study will assess the contribution of this technique and its feasibility in routine clinical practice.

Read the detailed description

Neurodevelopmental disorders (NDD) affect almost 10% of the general population, and encompass a very broad spectrum of manifestations linked to an abnormality in brain development. They include intellectual disability (ID), autism spectrum disorders (ASD), pervasive developmental disorders (PDD), epilepsy or even DYS disorders (dyslexia, dyspraxia...) or attention deficit disorder with or without hyperactivity (ADHD) (Thapar, Cooper, \& Rutter, 2017). These signs appear early, usually in childhood, and can progress into adulthood. Moreover, these disorders are frequently associated with each other and present with degrees of severity that vary widely from one patient to another. The genetic architecture of TND is complex, and remains poorly understood in some cases, despite the advent of new diagnostic technologies in human genetics. Currently, first-line genetic explorations, chromosomal analysis by microarray (ACPA) and high throughout sequencing enable a diagnosis to be made in 15-20% and 25-35% of cases respectively (Martin \& Ledbetter, 2017; Vasudevan \& Suri, 2017).

The interpretation of CNVs depends on many well-established parameters such as the nature of the variation (deletions are often more penetrant than duplications), size, gene content and heritability (Riggs et al.). Some recurrent CNVs are associated with specific phenotypes and their interpretation is unambiguous. Other non-recurrent CNVs are more difficult to interpret, particularly duplications, since they concern genes involved in NDD, or in essential developmental functions, notably brain development. The functional impact of duplications depends on their location, orientation (tandem or inverted) and whether or not an intact copy of the gene of interest is maintained. A whole-genome sequencing (WGS) study of 184 patients with duplications showed that in the majority of cases (83%), the duplicated segment was oriented in tandem and therefore had no functional consequences, and that in 2.8% of cases, this segment (inverted or inserted elsewhere) was at the origin of the gene dysregulation mechanism involved in the abnormal phenotype (Newman et al.). More complex chromosomal rearrangements, such as chromothripsis, complex translocations or atypical chromosomal rearrangements, are sometimes revealed by ACPA or exome sequencing techniques, but the mechanisms of occurrence escape these classic technologies.Optical genomic mapping (OGM) developed by Bionano Genomics is an innovative genome-wide scanning technology that enables the identification of balanced or unbalanced structural variants in diagnosis, as described in studies by Bocklandt et al. and more recently by the team of Mantere et al. Optical mapping is based on specific marking of repeated regions after extraction of high molecular weight DNA (100kb to 2Mb fragments). The algorithms associated with this new technology enable the identification of balanced structural rearrangements as early as 500bp, and unbalanced rearrangements as early as 5kb. This technique also enables the physical localization of each analyzed region, characterizing insertions, deletions, duplications, repeat expansions, inversions and translocations (Chan et al.).

This technology should enable us to characterize the breakpoints and orientation of duplicated segments to better understand the functional impact on the interrupted gene. Duplication can induce an additional complete copy of the gene, disrupt the gene leading to its misregulation (equivalent to a loss-of-function variation), disrupt another gene if the duplicated segment is inserted elsewhere in the genome or if it concerns a regulatory region, or have no effect on gene expression.

Hypothesis of the study and objectives :

In patients with TND, some CNVs are considered as variants of unknown significance (VOUS)"" when the classification criteria do not allow us to decide whether or not they are pathogenic; particularly, duplications involving genes of interest in neurodevelopment, where the impact on gene expression is uncertain. Qualitative knowledge of the structure of these anomalies, such as the direction of duplication or the position of insertion in the genome, could enable us to understand the effect on gene expression.

OGM technology provides access to this qualitative information, allowing us to make a genetic diagnosis in these patients: i/A tandem duplication would have no impact on gene expression, leaving two intact copies of the gene; ii/Inversion of the duplicated segment could result in loss of function of the gene; iii/insertion of the duplicated segment at another locus could deregulate the interest gene but also could modify the expression of other genes.

In cases of complex rearrangements identified by ACPA, qualitative data from OGM can help to understand the chromosomal mechanisms. Precise knowledge of these mechanisms can drive appropriate genetic counseling, particularly when the duplication is located on the X chromosome and transmitted by the mother of the affected child.

In addition, the higher resolution of OGM compared with ACPA could revealed other CNVs that also could be implicated in the abnormal phenotype.

Studied population and experimental scheme :

Our prospective multicentric (4 centers in Robert Debré hospital) study will include 35 patients with NDD and a chromosomal abnormality identified in ACPA. Depending on the genetic abnormality, patients were distributed in two groups:

Around half the patients carried duplications involving or interrupting a gene already implicated in NDD. Duplications may involve the X chromosome and be present in male patients. In the other group, half of the patients presented with a more complex chromosomal rearrangement (combination of deletion and duplication, ring chromosome structure, combination of several genomic imbalances).

Both parents will also be sampled and will be considered as ""controls"" for the study.

After informations gived to the family during a follow-up visit, an inclusion visit after 15 days will collect the necessary consent and peripheric blood samples of the patient and his parents.

Samples are sent to the Institut Curie (Genomics Platform - Department of Translational Research). The analytical phase is carried out at the Institut Curie: high molecular weight DNA extraction and Bionano technique. Data are transmitted to Robert Debré's cytogeneticists, who interpret the results.

The patients will be included for 2 years.

02

Conditions studied

  • Anomalies Chromosome

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03

In context

Chromosome Disorders

13 studies on the registry are indexed under Chromosome Disorders; 4 are open to participants now.

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Lead sponsor

Assistance Publique - Hôpitaux de Paris is the lead sponsor of 3,592 studies on the registry; 1,033 are open to participants now.

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

04

Who can participate

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

Study population

Both parents of each patient will also be sampled to facilitate interpretation of the genomic data and to clarify the segregation of chromosomal rearrangements identified in their child. In the case of chromosomal abnormalities on the X chromosome in a boy, the absence of the father will not be limiting.

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

  • Patients: children aged 2 and over at the time of inclusion (and up to 20 years of age)
  • Patients followed at Robert Debré for TND who, as part of their care,
  • who have undergone chromosomal analysis by DNA microarray (ACPA) which has identified a chromosomal abnormality of difficult interpretation (duplication or complex rearrangement).

Exclusion criteria

Exclusion Criteria:

  • Patients without medical insurance
05

Study design

Observational model
Cohort
Time perspective
Prospective
Enrollment
105 participants (actual)
Patient registry
No

Interventions

  • Otherblood sampling of all patients and their parents

    blood sampling of all patients and their parents

06

What researchers measure

Primary outcomes

  1. Precise characterization of chromosomal segments involved in duplications or complex chromosomal rearrangements identified in ACPA

    chromosomal segments involved in duplications or complex chromosomal rearrangements identified in ACPA are characterized by: * the size in kb * the orientation * the genomic position

    Time frame: 24 months

07

Study locations

1 site
08

References and documents

Individual participant data

Plan to share: Undecided

No publications or documents are linked to this record.

09

Timeline

1 registry update since Sep 25, 2026
ElapsedEstimatedEstimated, not yet reached

Ran from Jul 2022 to primary completion in Jul 2024, 24 months.

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

Registered
Jun 23, 2025
First posted
Aug 21, 2025
StartActual
Jul 12, 2022
Primary completionActual
Jul 12, 2024
CompletionActual
Aug 19, 2025
Last update
Nov 6, 2026
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.
Status
Recruiting→Completed
changed Nov 6, 2026
Sites
1 site added, 1 site removed
Show site
  • Robert Debré Hospital · Paris, France
Show 1 removed
  • Robert Debré Hospital · Paris, France
Nov 6, 2026
Show all 1 update
  1. Nov 6, 2026
    Recruiting→Completed
    1 site added, 1 site removed
    Show site
    • Robert Debré Hospital · Paris, France
    Show 1 removed
    • Robert Debré Hospital · Paris, France
    + 4 other changes: verification date, date precision, oversight details and contact details

From the registry record's own update history. This site started tracking changes on Sep 25, 2026; for anything earlier, see the record history on ClinicalTrials.gov ↗

10

Registry details

Key details

Study ID
NCT07133789
Responsible party
Sponsor
First posted
Aug 21, 2025
Start date
Jul 12, 2022
Primary completion
Jul 12, 2024
Completion
Aug 19, 2025
Last update
Nov 6, 2026

Oversight

Data monitoring committee
No
FDA-regulated drug
No
FDA-regulated device
No
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