Monogenic DiseasesPRENATSAFENCT07469657
Health Economic Evaluation of Non-Invasive Prenatal Exclusion Diagnosis
An observational study of Monogenic Diseases and Genetic Diseases, Inborn, run by Assistance Publique - Hôpitaux de Paris at 1 site in France.
Trial summary
Since the discovery of a small fraction of circulating cell-free fetal DNA (ccffDNA) in the blood of the mother, non-invasive prenatal diagnosis (NIPD) techniques using a simple blood sample have been developed to 1) screen for chromosomal abnormalities, 2) diagnose fetal sex, and 3) detect variants not carried by the… Read more about this study
- Who is it for?
- Ages 18 years and older
- Conditions the study is for
- Monogenic Diseases, Genetic Diseases, Inborn
- What is being tested?
- NIPD by NGS
- How many people
- 300 participants
- Where
- 1 siteFrance
- Study dates
- 26 Mar 2026to May 2029
- Phase
- Observational
- Are there results?
- Not yet: the study is under way
Key requirements
Who can take part, as listed by the sponsor. Only the study team can confirm whether you are eligible, so take this list to your doctor.
- Ages 18 years and older
- All sexes
- No healthy volunteers
- Adult, Older adult
Study population: Couples undergoing prenatal diagnosis are at high risk of transmitting a severe incurable condition due to a monogenic defect.
Who may be able to join
- Couple aged over 18 years
- Ongoing pregnancy of at least 7 weeks gestational age
- Requesting, within clinical care, invasive prenatal diagnosis or PCR-based NIPD for a particularly severe monogenic disorder, with indication confirmed by a Multidisciplinary Prenatal Diagnosis Center (CPDPN)
- Eligible for exclusion diagnosis
- Causative gene covered by the Agilent V8 exome capture kit
- Affiliated with the national general social security system
- Informed consent obtained from the pregnant woman and her partner
Who cannot join
- Prenatal diagnosis request not approved by a Multidisciplinary Prenatal Diagnosis Center (CPDPN)
- Disorder not analyzable by next-generation sequencing (e.g., triplet repeat expansions, sequence homology)
- Woman carrying the pathogenic variant
- Woman or partner deprived of liberty, under guardianship or curatorship
- Index case other than the father, a child, or a fetus from a previous pregnancy within the couple.
Trial locations and contacts
1 site in 1 country. Contact the study team or a site near you to ask about taking part.
France1 site, 1 recruiting
- Recruiting
Hôpital Necker Enfants Malades
Paris, Île-de-France Region, 75015
Julie STEFFANN, MD, PhD, 01 44 38 17 47 ext. +33, julie.steffann@aphp.fr
Sarah BOUCHARD, Project advisor, 01 42 19 28 79 ext. +33
About this study
Since the discovery of a small fraction of circulating cell-free fetal DNA (ccffDNA) in the blood of the mother, non-invasive prenatal diagnosis (NIPD) techniques using a simple blood sample have been developed to 1) screen for chromosomal abnormalities, 2) diagnose fetal sex, and 3) detect variants not carried by the mother (exclusion NIPD by PCR).
Exclusion NIPD by PCR is currently available for certain common variants, but developing it for each variant takes 3-6 weeks per center. The development process for PCR NIPD is lengthy and costly for each variant tested, thereby restricting access to this technique. In practice, this technique is not widely available to couples at risk of transmitting a severe monogenic disease in France, due to the large number of different genes and multiple variants of a given gene.
Read more
Next-generation sequencing (NGS) is based on the simultaneous, parallel execution of millions of sequencing reactions, enabling the same nucleotide sequence to be sequenced hundreds of times. It provides qualitative information on the nature of the sequenced base, as well as quantitative information on the number of times the base has been sequenced (reads). Although it only allows for the analysis of around 2% of the entire genome, NGS sequencing of the exome corresponds to almost all the exons of the 22,000 or so genes in our genome. However, this generates a large amount of data, leading to additional costs.
Since its widespread adoption by diagnostic laboratories, some teams have developed an NGS-based NIPD for the exclusion of a pathogenic variant. It allows the analysis of multiple pathogenic variants without requiring an additional development phase. They have demonstrated that NGS-based NIPD is a robust and reliable technology, but one that incurs additional reagent costs.
In France, 1,700 to 1,800 prenatal diagnostic tests (PND) for monogenic diseases are performed each year due to family history. Between 35 and 40% of couples undergoing invasive PND could benefit from NIPD by NGS, as proposed in the PrenatSafe project. The increased availability of NIPD, whether by PCR or NGS, could also affect couples' demand in the long term. In France, the introduction of NIPD by NGS is likely to lead to an increase in requests for NIPD, as many couples with a low risk of recurrence (in the case of de novo mutations) will probably opt for it due to its lack of iatrogenicity.
The rapid and widespread rise of NIPD by NGS, made possible by the use of a standardized, generalizable technique such as NGS, will transform our practices throughout the country. The PrenatSafe project therefore aims to evaluate the cost/benefit ratio of NIPD by NGS compared to the current standard procedure: NIPD by PCR when performed in clinical practice or PND by invasive sampling (trophoblast biopsy or amniocentesis), using an automated, standardized NGS technique involving exome sequencing, which covers almost all indications for exclusion NIPD.
This project is the first cost-consequence analysis of prospective exome-based NIPD, using a single standardized technique. The aim is to translate this innovative technology into routine practice if it proves beneficial and economically viable. Exome-based NIPD for exclusion can be fully automated, from ccfDNA extraction to sequencing. This reduces the risk of human error and brings turnaround times in line with the requirements of prenatal diagnosis. If successful, exome-based NIPD would become an earlier alternative to invasive PND without increasing the risk of fetal loss. It would be available for a very large number of indications and could easily be transferred to other prenatal diagnosis centers in France.
Read the detailed description
The study will be proposed to couples undergoing prenatal diagnosis following genetic counseling or during a pregnancy follow-up consultation. The NIPD results obtained via NGS within the PRENATSAFE study will not be disclosed to the couple or their prescribing physician, and they will not impact clinical management.
No additional conditions will be diagnosed through NGS-based NIPD. However, the analysis will be conducted under real-life conditions, with a turnaround time of less than ten working days, in order to provide an accurate estimate of NIPD costs.
Informed consent will be obtained from the pregnant woman, her partner, and , if applicable both legal guardians by a physician or trained genetic personnel (e.g., a genetic counselor or another investigator).
Two additional blood samples (20 ml total, Streck tubes) will be collected from the pregnant woman during routine pregnancy monitoring, prior to any invasive prenatal diagnosis if indicated. These tubes will enable the automated extraction of circulating cell-free fetal DNA (cffDNA).
NIPD by NGS will be performed in a trio or quartet format, involving exome sequencing of ccffDNA and genomic DNA from the father, mother and from a previous affected child/fetus, if applicable. Genomic DNA samples will either be collected and stored as part of routine clinical care or transferred to the molecular genetics laboratory at Necker-Enfants Malades Hospital (AP-HP) if necessary. Library preparation for sequencing will be automated using the Magnis Dx system (Agilent Technologies), and data analysis will be conducted using a dedicated bioinformatics algorithm.
For the study, results from prenatal diagnoses performed as part of routine care (invasive PND or PCR-based NIPD) and occurrences of fetal loss and pregnancy outcomes will be recorded.
Pregnancy will be monitored according to standard clinical practice, with no additional visits required for research purposes. Follow-up for the PRENATSAFE study will conclude one month after the expected end of pregnancy or following the post-termination consultation, which occurs three months after medical termination if applicable.
- Conditions
- Monogenic Diseases, Genetic Diseases, Inborn
- Being tested
- NIPD by NGS
- Keywords
- Prenatal Diagnosis (PND), Non-Invasive Prenatal Diagnosis (NIPD), Circulating Cell-Free Fetal DNA (cffDNA), Next Generation Sequencing (NGS), Cost and Outcomes
- Medical subject headings
- Genetic Diseases, Inborn
What participants receive
What participants receive. In a randomised study each person is assigned to one group by chance.
NIPD by NGSDiagnostic test
Two additional 10 ml blood samples (Streck tubes) will be collected from the pregnant woman during routine pregnancy monitoring, prior to any invasive prenatal diagnosis if indicated, in order to extract maternal circulating DNA. This circulating cell-free DNA comprises a small amount of fetal DNA, approximately 10%. Exome sequencing will be performed on circulating DNA in order to detect the exclusion pathogenic variant.
| Study group | Role | What they receive |
|---|---|---|
| NIPD by NGS | The study group includes pregnant couples at risk of transmitting a severe monogenic disorder, for whom prenatal diagnosis has been approved by a multidisciplinary prenatal committee. Eligible participants are over 18, have an ongoing pregnancy (≥7 weeks), and meet technical criteria for exclusion of NIPD by next-generation exome sequencing. Informed consent is required. Receives: Diagnostic Test: NIPD by NGS |
What is being measured
The primary outcome is the main question the study is designed to answer.
Cost-consequence analysis
Total costs associated with non-invasive prenatal diagnosis (NIPD) based on circulating cell-free fetal DNA analyzed by next-generation exome sequencing, compared with current prenatal diagnostic procedures.
Measured: From inclusion until 1 month after the expected date of delivery or the post-termination consultation, up to 8 months
Secondary outcomes (8)
Cost-effectiveness Analysis of NGS-based NIPD
Number of invasive prenatal diagnoses avoided.
Measured: From inclusion until 1 month after the expected date of delivery or the post-termination consultation, up to 8 months
Participation Rate in NGS-based NIPD
Proportion of eligible couples who consent to participate in NGS-based NIPD.
Measured: From inclusion until 1 month after the expected date of delivery or the post-termination consultation, up to 8 months
Acceptability of NGS-based NIPD
Acceptability of NGS-based NIPD among participating couples (survey or questionnaire score).
Measured: From inclusion until 1 month after the expected date of delivery or the post-termination consultation, up to 8 months
Rate of Non-Conclusive NIPD Results
Proportion of NGS-based NIPD tests yielding non-conclusive results.
Measured: From inclusion until 1 month after the expected date of delivery or the post-termination consultation, up to 8 months
Factors Associated with NGS-based NIPD Failure
Maternal or fetal factors associated with failure of NGS-based NIPD.
Measured: From inclusion until 1 month after the expected date of delivery or the post-termination consultation, up to 8 months
Genomic Regions Where NIPD Cannot Be Reliably Performed
Identification of genomic regions with unreliable NGS-based NIPD results.
Measured: From inclusion until 1 month after the expected date of delivery or the post-termination consultation, up to 8 months
Feasibility of NGS-based NIPD in Multiple Pregnancies
Assessment of feasibility and reliability of NGS-based NIPD in twin or higher-order pregnancies.
Measured: From inclusion until 1 month after the expected date of delivery or the post-termination consultation, up to 8 months
Budget impact analysis of NGS-based NIPD
Total projected costs for the introduction and large-scale implementation of NGS-based NIPD in the healthcare system.
Measured: From inclusion until 1 month after the expected date of delivery or the post-termination consultation, up to 8 months
Timeline
From the start of the study to its completion; the mark is today. Estimated dates are the sponsor’s plan.
- First posted13 Mar 2026
- Study start26 Mar 2026
- Primary completionMay 2029 (estimated)
- Study completionMay 2029 (estimated)
Resources
- Official record on ClinicalTrials.govThe registry entry this page is built from, with its full change history.
- Other trials for Monogenic DiseasesStudies of the same condition, open and under way.
- More trials run by Assistance Publique - Hôpitaux de ParisThe sponsor's other registered studies.
- What the trial phases meanHow a treatment moves from first tests in people to approval.
More details
For doctors and researchers: how the study is designed, who runs it, and its registry IDs.
Study design
- Study type
- Observational
- Observational model
- Cohort
- Time perspective
- Prospective
- Enrolment
- 300 participants (estimated)
Sponsor and investigators
- Lead sponsor
- Assistance Publique - Hôpitaux de Paris
- Sponsor type
- University, hospital or other
- Collaborators
- URC-CIC Paris Descartes Necker Cochin, Imagine
- Responsible party
- Sponsor
- Investigators
- Julie STEFFANN, MD,PhD, Principal investigator, Hôpital Universitaire Necker - Enfants Malades
IDs, dates and publications
- ClinicalTrials.gov ID
- NCT07469657
- Sponsor's protocol ID
- APHP240985
- Other IDs
- IDRCB
- Acronym
- PRENATSAFE
- Status last verified
- Aug 2026
- First submitted
- 27 Jan 2026
- Last updated
- 10 Aug 2026
- Results posted
- No
- Data monitoring committee
- No
- FDA-regulated drug
- No
- FDA-regulated device
- No
Study at a glance
From the registry record, last updated by the sponsor on 10 Aug 2026. Recruitment status is as the sponsor reported it: confirm with the study team.
- Official title
- Health Economic Evaluation of Non-Invasive Prenatal Exclusion Diagnosis
- ClinicalTrials.gov ID
- NCT07469657
- Acronym / sponsor ID
- PRENATSAFE / APHP240985
- Conditions
- Monogenic Diseases, Genetic Diseases, Inborn
- Keywords
- Prenatal Diagnosis (PND), Non-Invasive Prenatal Diagnosis (NIPD), Circulating Cell-Free Fetal DNA (cffDNA), Next Generation Sequencing (NGS), Cost and Outcomes
- Study type
- Observational
- Recruitment status
- Recruiting
- Enrolment
- 300 participants (estimated)
- Lead sponsor
- Assistance Publique - Hôpitaux de ParisUniversity, hospital or other
- Collaborators
- URC-CIC Paris Descartes Necker Cochin, Imagine
- Study start
- 26 Mar 2026 (actual)
- Primary completion
- May 2029 (estimated)
- Study completion
- May 2029 (estimated)
- First posted
- 13 Mar 2026 (actual)
- Results
- Not posted in the source record
Clinical summary
The research question as the sponsor registered it. This describes what the study plans to test, not what it found.
Since the discovery of a small fraction of circulating cell-free fetal DNA (ccffDNA) in the blood of the mother, non-invasive prenatal diagnosis (NIPD) techniques using a simple blood sample have been developed to 1) screen for chromosomal abnormalities, 2) diagnose fetal sex, and 3) detect variants not carried by the mother (exclusion NIPD by PCR).
Exclusion NIPD by PCR is currently available for certain common variants, but developing it for each variant takes 3-6 weeks per center. The development process for PCR NIPD is lengthy and costly for each variant tested, thereby restricting access to this technique. In practice, this technique is not widely available to couples at risk of transmitting a severe monogenic disease in France, due to the large number of different genes and multiple variants of a given gene.
Next-generation sequencing (NGS) is based on the simultaneous, parallel execution of millions of sequencing reactions, enabling the same nucleotide sequence to be sequenced hundreds of times. It provides qualitative information on the nature of the sequenced base, as well as quantitative information on the number of times the base has been sequenced (reads). Although it only allows for the analysis of around 2% of the entire genome, NGS sequencing of the exome corresponds to almost all the exons of the 22,000 or so genes in our genome. However, this generates a large amount of data, leading to additional costs.
Since its widespread adoption by diagnostic laboratories, some teams have developed an NGS-based NIPD for the exclusion of a pathogenic variant. It allows the analysis of multiple pathogenic variants without requiring an additional development phase. They have demonstrated that NGS-based NIPD is a robust and reliable technology, but one that incurs additional reagent costs.
In France, 1,700 to 1,800 prenatal diagnostic tests (PND) for monogenic diseases are performed each year due to family history. Between 35 and 40% of couples undergoing invasive PND could benefit from NIPD by NGS, as proposed in the PrenatSafe project. The increased availability of NIPD, whether by PCR or NGS, could also affect couples' demand in the long term. In France, the introduction of NIPD by NGS is likely to lead to an increase in requests for NIPD, as many couples with a low risk of recurrence (in the case of de novo mutations) will probably opt for it due to its lack of iatrogenicity.
The rapid and widespread rise of NIPD by NGS, made possible by the use of a standardized, generalizable technique such as NGS, will transform our practices throughout the country. The PrenatSafe project therefore aims to evaluate the cost/benefit ratio of NIPD by NGS compared to the current standard procedure: NIPD by PCR when performed in clinical practice or PND by invasive sampling (trophoblast biopsy or amniocentesis), using an automated, standardized NGS technique involving exome sequencing, which covers almost all indications for exclusion NIPD.
This project is the first cost-consequence analysis of prospective exome-based NIPD, using a single standardized technique. The aim is to translate this innovative technology into routine practice if it proves beneficial and economically viable. Exome-based NIPD for exclusion can be fully automated, from ccfDNA extraction to sequencing. This reduces the risk of human error and brings turnaround times in line with the requirements of prenatal diagnosis. If successful, exome-based NIPD would become an earlier alternative to invasive PND without increasing the risk of fetal loss. It would be available for a very large number of indications and could easily be transferred to other prenatal diagnosis centers in France.
Detailed description
The study will be proposed to couples undergoing prenatal diagnosis following genetic counseling or during a pregnancy follow-up consultation. The NIPD results obtained via NGS within the PRENATSAFE study will not be disclosed to the couple or their prescribing physician, and they will not impact clinical management.
No additional conditions will be diagnosed through NGS-based NIPD. However, the analysis will be conducted under real-life conditions, with a turnaround time of less than ten working days, in order to provide an accurate estimate of NIPD costs.
Informed consent will be obtained from the pregnant woman, her partner, and , if applicable both legal guardians by a physician or trained genetic personnel (e.g., a genetic counselor or another investigator).
Two additional blood samples (20 ml total, Streck tubes) will be collected from the pregnant woman during routine pregnancy monitoring, prior to any invasive prenatal diagnosis if indicated. These tubes will enable the automated extraction of circulating cell-free fetal DNA (cffDNA).
NIPD by NGS will be performed in a trio or quartet format, involving exome sequencing of ccffDNA and genomic DNA from the father, mother and from a previous affected child/fetus, if applicable. Genomic DNA samples will either be collected and stored as part of routine clinical care or transferred to the molecular genetics laboratory at Necker-Enfants Malades Hospital (AP-HP) if necessary. Library preparation for sequencing will be automated using the Magnis Dx system (Agilent Technologies), and data analysis will be conducted using a dedicated bioinformatics algorithm.
For the study, results from prenatal diagnoses performed as part of routine care (invasive PND or PCR-based NIPD) and occurrences of fetal loss and pregnancy outcomes will be recorded.
Pregnancy will be monitored according to standard clinical practice, with no additional visits required for research purposes. Follow-up for the PRENATSAFE study will conclude one month after the expected end of pregnancy or following the post-termination consultation, which occurs three months after medical termination if applicable.
Study design
- Observational model
- Cohort
- Time perspective
- Prospective
- Number of arms
- 1
| Arm | Type | Receives |
|---|---|---|
| NIPD by NGS | – | Diagnostic Test: NIPD by NGSThe study group includes pregnant couples at risk of transmitting a severe monogenic disorder, for whom prenatal diagnosis has been approved by a multidisciplinary prenatal committee. Eligible participants are over 18, have an ongoing pregnancy (≥7 weeks), and meet technical criteria for exclusion of NIPD by next-generation exome sequencing. Informed consent is required. |
Who may qualify
- Ages
- 18 years and older
- Sex
- All
- Healthy volunteers
- Not accepted
- Age groups
- Adult, Older adult
- Study population
- Couples undergoing prenatal diagnosis are at high risk of transmitting a severe incurable condition due to a monogenic defect.
Key inclusion criteria (7 listed)
- Couple aged over 18 years
- Ongoing pregnancy of at least 7 weeks gestational age
- Requesting, within clinical care, invasive prenatal diagnosis or PCR-based NIPD for a particularly severe monogenic disorder, with indication confirmed by a Multidisciplinary Prenatal Diagnosis Center (CPDPN)
- Eligible for exclusion diagnosis
- Causative gene covered by the Agilent V8 exome capture kit
Key exclusion criteria (5 listed)
- Prenatal diagnosis request not approved by a Multidisciplinary Prenatal Diagnosis Center (CPDPN)
- Disorder not analyzable by next-generation sequencing (e.g., triplet repeat expansions, sequence homology)
- Woman carrying the pathogenic variant
- Woman or partner deprived of liberty, under guardianship or curatorship
- Index case other than the father, a child, or a fetus from a previous pregnancy within the couple.
Eligibility is decided by the study team after screening; this overview does not establish that a patient qualifies. Full inclusion and exclusion criteria.
Interventions
| Intervention | Type | Arms |
|---|---|---|
| NIPD by NGSTwo additional 10 ml blood samples (Streck tubes) will be collected from the pregnant woman during routine pregnancy monitoring, prior to any invasive prenatal diagnosis if indicated, in order to extract maternal circulating DNA. This circulating cell-free DNA comprises a small amount of fetal DNA, approximately 10%. Exome sequencing will be performed on circulating DNA in order to detect the exclusion pathogenic variant. | Diagnostic test | NIPD by NGS |
Primary outcome
Cost-consequence analysis
Time frame: From inclusion until 1 month after the expected date of delivery or the post-termination consultation, up to 8 months
Total costs associated with non-invasive prenatal diagnosis (NIPD) based on circulating cell-free fetal DNA analyzed by next-generation exome sequencing, compared with current prenatal diagnostic procedures.
8 secondary outcomes
Cost-effectiveness Analysis of NGS-based NIPD
Time frame: From inclusion until 1 month after the expected date of delivery or the post-termination consultation, up to 8 months
Participation Rate in NGS-based NIPD
Time frame: From inclusion until 1 month after the expected date of delivery or the post-termination consultation, up to 8 months
Acceptability of NGS-based NIPD
Time frame: From inclusion until 1 month after the expected date of delivery or the post-termination consultation, up to 8 months
Rate of Non-Conclusive NIPD Results
Time frame: From inclusion until 1 month after the expected date of delivery or the post-termination consultation, up to 8 months
Factors Associated with NGS-based NIPD Failure
Time frame: From inclusion until 1 month after the expected date of delivery or the post-termination consultation, up to 8 months
Genomic Regions Where NIPD Cannot Be Reliably Performed
Time frame: From inclusion until 1 month after the expected date of delivery or the post-termination consultation, up to 8 months
Feasibility of NGS-based NIPD in Multiple Pregnancies
Time frame: From inclusion until 1 month after the expected date of delivery or the post-termination consultation, up to 8 months
Budget impact analysis of NGS-based NIPD
Time frame: From inclusion until 1 month after the expected date of delivery or the post-termination consultation, up to 8 months
Results and safety
This study is still under way. Results are not available in the source record yet.
Research links
- Official record on ClinicalTrials.govLast updated by the sponsor 10 Aug 2026.
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Referral and contact
AzTrials does not enrol participants or take referrals. Contact the study team or a site listed below; they decide who can take part.
Julie STEFFANN, MD,PhD principal investigator
Hôpital Universitaire Necker - Enfants Malades
1 site in 1 country: see every site and its status.
Questions about this trial
What is this clinical trial studying?
An observational study of Monogenic Diseases and Genetic Diseases, Inborn, run by Assistance Publique - Hôpitaux de Paris at 1 site in France.
The full registered description is in the About this study section and the official record.
Who may be eligible to take part?
The sponsor lists 7 inclusion and 5 exclusion criteria. Eligibility is decided by the study team after screening, so read the full criteria and contact a listed site.
Is this clinical trial currently recruiting?
The record says: looking for participants now, as of the sponsor's last update on 10 Aug 2026. Status can change between updates, so confirm with the study contact before making plans.
Where is the study taking place?
The record lists 1 site in France. Whether a site is taking part right now should be confirmed with that site. See every site.
What are the possible benefits and risks?
They depend on the study and the treatment, and no study can promise a benefit. The study team explains the known risks during informed consent, before anyone joins; the record itself does not list them.
Are results available for this study?
This study is still under way. Results are not available in the source record yet.
How can a doctor refer a patient or contact the research team?
Contact Julie STEFFANN, MD, PhD (01 44 38 17 47 ext. +33, julie.steffann@aphp.fr), or a site near the patient. AzTrials does not enrol participants or take referrals.
What does the primary outcome measure?
Cost-consequence analysis (time frame: From inclusion until 1 month after the expected date of delivery or the post-termination consultation, up to 8 months). It is what the study was designed to measure, not a finding.
Where can I read the original study information?
Does a listing mean the treatment is approved or proven to work?
No. A listing means the study is registered. It does not show that the treatment is safe, works, or is approved by a regulator.
How often is this information updated?
AzTrials copies changed records from ClinicalTrials.gov every night and reloads the whole registry every week. The sponsor last updated this record on 10 Aug 2026; AzTrials last refreshed its copy on 8 Nov 2026.