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Amyotrophic Lateral SclerosisROSANCT06083584

Development of Targeted RNA-Seq for Amyotrophic Lateral Sclerosis Diagnosis

An observational study of Amyotrophic Lateral Sclerosis, run by Centre Hospitalier Universitaire de Nīmes at 7 sites in France.

Recruiting

Looking for participants now. Contact the study team or a site below to ask about taking part.

Sites and contacts
Official record

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Trial summary

Genetic diagnosis of Amyotrophic Lateral Sclerosis (ALS) could identify the origin of the disease, potentially allowing the patient to pursue targeted/gene therapy. However, many familial forms of ALS are genetically undiagnosed, either because no variant has been detected in the genes of interest, or because the… Read more about this study

Who is it for?
Ages 18 years and older
Conditions the study is for
Amyotrophic Lateral Sclerosis
What is being tested?
RNA sequencing
How many people
192 participants
Where
7 sitesFrance
Study dates
22 Nov 2023to May 2027
Phase
Observational

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
  • Adult, Older adult

Study population: Patients will be recruited during a consultation for a clinical diagnosis of ALS for which a request for a genetic diagnosis has been made in one of the prescribing centers: CHU Lyon, Montpellier University Hospital, Marseille University Hospital, Clermont-Ferrand University Hospital, Bordeaux University Hospital, Toulouse University Hospital.

Who may be able to join

  • Have a prescription for a genetic diagnosis of ALS (or familial hypercholesterolemia for the control cohort)
  • Have given their informed consent for the genetic study and the biobank
  • The patient must be a member or beneficiary of a health insurance plan

Who cannot join

  • The patient is under safeguard of justice or state guardianship

Trial locations and contacts

7 sites in 1 country. Contact the study team or a site near you to ask about taking part.

7 sites in 1 country

France7 sites, 7 recruiting
  • CHU de Bordeaux

    Bordeaux

    Gwendal Le Masson, gwendal.le-masson@chu-bordeaux.fr

    Gwendal Le Masson

    Recruiting
  • CHU de Clermont-Ferrand

    Clermont-Ferrand

    Nathalie Guy, nguy@chu-clermontferrand.fr

    Nathalie Guy

    Recruiting
  • CHU de Lyon

    Lyon

    Emilien Bernard, emilien.bernard@chu-lyon.fr

    Emilien Bernard

    Recruiting
  • La Timone

    Marseille

    Annie Verschueren, annie.verschueren@ap-hm.fr

    Annie Verschueren

    Recruiting
  • CHU de Montpellier

    Montpellier

    Elisa De la Cruz, e-delacruz@chu-montpellier.fr

    Elisa De la Cruz

    Recruiting
  • CHU de Nîmes

    Nîmes

    Anissa Megzari, 04.66.68.42.36, drc@chu-nimes.fr

    Claire Guissart

    Recruiting
  • CHU de Toulouse

    Toulouse

    Blandine Acket, acket.b@chu-toulouse.fr

    Blandine Acket

    Recruiting

Other trials in France

About this study

Genetic diagnosis of Amyotrophic Lateral Sclerosis (ALS) could identify the origin of the disease, potentially allowing the patient to pursue targeted/gene therapy. However, many familial forms of ALS are genetically undiagnosed, either because no variant has been detected in the genes of interest, or because the detected variant(s) have uncertain significance. Currently, molecular diagnosis takes place in two stages: 1) Search for the GGGGCC expansion in the C9ORF72 gene by RP-PCR; 2) Analysis of the coding regions by high-throughput sequencing of a panel of 30 genes involved in ALS.

Many of these variants of uncertain significance affect splicing. Their impact can be predicted using in silico tools, but only an analysis of the patient's RNA can confirm their pathogenic nature. Currently, the analysis of transcripts is only done a posteriori, when a variant predicted to impact splicing is detected on the patient's DNA. RT-PCR followed by Sanger sequencing then verifies the impact of the splice variants. This method confirmed the impact of certain splice variants in patients. However, this method is time-consuming and requires custom development, and is mutation/gene/patient-dependent. In contrast, high-throughput RNA sequencing (RNA-Seq) simultaneously analyzes the splicing of numerous genes, with a global approach, applicable to all patients. This approach avoids the custom design of primers, which can be biased by the interpretation of splicing predictions, while RNA-Seq systematically captures and sequences all the transcripts. Finally, RNA-Seq provides additional information compared to DNA sequencing such as the detection of exon skipping, intron inclusion, and the creation of fusion transcripts.

In the GTEx project (GTEx Consortium, 2013), expression levels of human genome transcripts were quantified by RNA-Seq. Using these results, the study investigators measured expression of transcripts of known ALS genes in whole blood. Applying a threshold value of 0.5 transcripts per million reads (TPM), 25 of the 30 ALS genes currently analyzed by NGS in routine diagnostics at Nîmes University Hospital could be eligible for a complete analysis by RNA-Seq. None of the French laboratories carrying out genetic analyzes of ALS has yet developed RNA-Seq as a routine diagnostic tool. The study laboratory receives more than 600 requests for genetic diagnosis of ALS patients per year. The aim of this study is therefore to develop a global method for analyzing RNA transcripts of ALS genes to categorize the mutations to improve the diagnostic management of patients.

Being tested
RNA sequencing
Medical subject headings
Amyotrophic Lateral Sclerosis

What participants receive

What participants receive. In a randomised study each person is assigned to one group by chance.

  • RNA sequencingOther

    RNA-Seq (Sureselect XT HS2 RNA) from patient blood sample

Study groups in NCT06083584
Study groupRoleWhat they receive
Positive controls6 patients already in database. The 6 confirmed splicing mutations are: DCTN1 (NM_004082.5): c.3209G>T, OPTN (NM_001008211.1) : c.1613-7T>G, FUS (NM_004960.4) : c.764+8T>A, GRN (NM_002087.4): c.835+1G>A, GRN (NM_002087.4): c.709-3C>G, SPG11 (NM_025137.4): c.3039-5T>G
Receives: Other: RNA sequencing
Negative controls30 patients with familial hypercholesterolemia. The absence of splicing anomalies in the SLA genes after confirmation by RT-PCR followed by Sanger sequencing of the absence of anomalies for the 6 variants listed above for each of the 30 individuals.
Receives: Other: RNA sequencing
Exploratory cohort156 ALS: 20 ALS patients with splice variants predicted to be deleterious by in silico prediction software; 136 panel-analysis-negative ALS patients (priority will be given to familial ALS)
Receives: Other: RNA sequencing

What is being measured

The primary outcome is the main question the study is designed to answer.

  1. Concordance between the RNA-Seq results (index text) versus RT-PCR followed by Sanger sequencing (reference technique) on positive plus negative controls

    Sashimi Plot visualized in Integrative Genomics Viewer

    Measured: Day 0

Secondary outcomes (1)
  1. Frequency of splicing anomalies detected in ALS patients in the "exploratory cohort" versus negative controls.

    Frequency

    Measured: Day 0

Timeline

From the start of the study to its completion; the mark is today. Estimated dates are the sponsor’s plan.

  1. First posted16 Oct 2023
  2. Study start22 Nov 2023
  3. Primary completionMay 2027 (estimated)
  4. Study completionMay 2027 (estimated)

Resources

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
192 participants (estimated)
IDs, dates and publications
ClinicalTrials.gov ID
NCT06083584
Sponsor's protocol ID
NIMAO/LOCAL/2023/CG-01
Acronym
ROSA
Status last verified
Oct 2026
First submitted
9 Oct 2023
Last updated
22 Oct 2026
Results posted
No
FDA-regulated drug
No
FDA-regulated device
No

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