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Myelodysplastic SyndromesNCT04251078

Monitoring Mutational Burden in Low Risk MDS Patients Using Sequential Peripheral Blood Samples

An observational study of Myelodysplastic Syndromes, run by Josep Carreras Leukaemia Research Institute at 1 site in Spain.

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

Myelodysplastic syndromes (MDS) are a heterogeneous group of clonal hematopoietic stem cell malignancies. Somatic cytogenetic and molecular aberrations and the evolution of subclonal malignant cell populations are responsible for the development and progression of MDS into acute myeloid leukemia. Read more about this study

Who is it for?
Ages 18 years and older
Conditions the study is for
Myelodysplastic Syndromes
How many people
200 participants
Where
1 siteSpain
Study dates
1 Jan 2019to 30 Jun 2025
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: Taking into account the incidence of MDS in the area, it is planned to collect samples from 100 MDS patients per year (during the first 2 years of the project) categorized as very low, low and intermediate risk.

Who may be able to join

  • Patients categorized as very low, low or intermediate risk according to the Revised International Prognosis Scoring System for MDS (IPSS-R).
  • Patients that meet the previous criteria and are not receiving any treatment or are receiving supportive care only (erythropoietin is accepted).

Who cannot join

  • Patients with "MDS with isolated del(5q)" diagnosis, according to 2017 World Health Organization Classification (WHO).
  • Patients receiving any disease modifying therapies (e.g. hypomethylating agents).

Trial locations and contacts

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

Spain1 site, 1 recruiting
  • Josep Carreras Leukaemia Research Institute

    Badalona, Barcelona, 08916

    Francesc Sole, PhD, (+34) 93 557 28 06, fsole@carrerasresearch.org

    Recruiting

Other trials in Spain

About this study

Myelodysplastic syndromes (MDS) are a heterogeneous group of clonal hematopoietic stem cell malignancies. Somatic cytogenetic and molecular aberrations and the evolution of subclonal malignant cell populations are responsible for the development and progression of MDS into acute myeloid leukemia.

Within only one decade the availability of new genome-wide technologies, like next generation sequencing (NGS), has revolutionized basic research. The routine clinical use of NGS analysis together with well-established diagnostic tools, like chromosome banding analysis or fluorescence in situ hybridization, will substantially add to existing diagnostic and prognostic criteria. This comprehensive combined approach could revolutionize the way we manage patient care. However, little is known about the application of such techniques in routine diagnostics and standards for such analyses are still missing.

Read more

In a recent publication from the research group, (Article DOI: 10.1002/ajh.25089) it was demonstrated that the analysis of peripheral blood cells (at diagnosis) by NGS is feasible and yields data that are equivalent to the results obtained from bone marrow cells (BMC), which is currently the gold standard for most molecular diagnostic analyses.

Not longer depending on the severe and for the patient painful collection of bone marrow aspirates now it is possible to perform comprehensive genetic analysis at short intervals on peripheral blood of MDS patients to detect and closely monitor patterns/pathways of clonal evolution of the malignant cell population in a routine diagnostic setting. It is expected that the obtained data from this study will substantially add to:

  1. Understand the functional relevance of identified mutations and the implications of combined mutations.
  2. Condense the findings from NGS together with data from established genetic methods (conventional cytogenetics, FISH) to a comprehensive view on MDS genetics and its dynamics considering strengths and weaknesses of each component of this approach.
  3. Demonstrate that peripheral blood could be an appropriate sample to perform NGS follow-up studies.

In a series of very low, low and intermediate risk MDS patients from Spain it is intended to retrospectively perform NGS (targeted deep sequencing) of diagnosis and consecutive follow-up samples selecting those cases that showed signs of progression of the disease.

Read the detailed description

Myelodysplastic syndromes (MDS) are a heterogeneous group of clonal hematopoietic stem cell malignancies. Somatic cytogenetic and molecular aberrations and the evolution of subclonal malignant cell populations are responsible for the development and progression of MDS into acute myeloid leukemia.

Within only one decade the availability of new genome-wide technologies, like next generation sequencing (NGS), has revolutionized basic research. The routine clinical use of NGS analysis together with well-established diagnostic tools, like chromosome banding analysis or fluorescence in situ hybridization, will substantially add to existing diagnostic and prognostic criteria. This comprehensive combined approach could revolutionize patients management. However, little is known about the application of such techniques in routine diagnostics and standards for such analyses are still missing.

In a recent publication from the research group, (Article DOI: 10.1002/ajh.25089) it was demonstrated that the analysis of peripheral blood cells (at diagnosis) by NGS is feasible and yields data that are equivalent to the results obtained from bone marrow cells (BMC), which is currently the gold standard for most molecular diagnostic analyses.

Not longer depending on the severe and for the patient painful collection of bone marrow aspirates, now it is possible to perform comprehensive genetic analysis at short intervals on peripheral blood of MDS patients to detect and closely monitor patterns/pathways of clonal evolution of the malignant cell population in a routine diagnostic setting. It is expected that the obtained data from this study will substantially add to:

  1. Understand the functional relevance of identified mutations and the implications of combined mutations.
  2. Condense the findings from NGS together with data from established genetic methods (conventional cytogenetics, FISH) to a comprehensive view on MDS genetics and its dynamics considering strengths and weaknesses of each component of this approach.
  3. Demonstrate that peripheral blood could be an appropriate sample to perform NGS follow-up studies.

In a series of very low, low and intermediate risk MDS patients from Spain it is intended to retrospectively perform NGS (targeted deep sequencing) of diagnosis and consecutive follow-up samples selecting those cases that showed signs of progression of the disease.

Methodology

Taking into account the incidence of MDS in the area, it is planned to collect samples from 100 MDS patients per year (during the first 2 years of the project) categorized as very low, low and intermediate risk.

All collected samples will be analyzed by conventional cytogenetics (routinely performed as part of the diagnostic tests) and also SF3B1 mutation analysis will be done in order to screen common alterations in low risk patients. In this way, a better characterization of the patients will be done and personalized treatment options according to each patient´s risk could be offered.

According to the literature, around 5-15% are expected to progress to high/very high-risk MDS subtype or to acute myeloid leukemia (AML). Only those cases that show signs of disease progression will be retrospectively analyzed by NGS.

The following criteria will be taken for patients enrollment:

Inclusion criteria:

  • Patients categorized as very low, low or intermediate risk according to the Revised International Prognosis Scoring System for MDS (IPSS-R).
  • Patients that meet the previous criteria and are not receiving any treatment or are receiving supportive care only (erythropoietin is accepted).

Exclusion criteria:

  • Patients with "MDS with isolated del(5q)" diagnosis, according to 2017 World Health Organization Classification (WHO).
  • Patients receiving any disease modifying therapies (e.g. hypomethylating agents).

Definition of progression: evolution to high/very high risk MDS subtype or to AML.

Peripheral blood (PB) and bone marrow (BM) samples will be collected and stored at the moment of diagnosis. PB samples will be collected every 6 months and at the time of progression of the disease (before receiving any treatment) BM sample will be also collected.

DNA extraction will be performed in diagnosis BM samples and SF3B1 gene will be analyzed by Sanger sequencing in all cases.

A total of 40 cases are estimated to be studied by NGS, 20 patients that are expected to show a progression of the disease and 20 patients without progression:

  • Those cases that show progression of the disease will be retrospectively analyzed by NGS. Estimating that 10% of patients could progress, it is expected to include 10 new patients per year (during the two first years of the project) in the molecular analysis. This accounts a total of 20 patients after 2 years of follow-up.
  • NGS will be performed in DNA from whole BM and PB paired samples at the moment of diagnosis and progression. Three PB follow-up samples in between will also be analyzed in order to track clonal dynamics. This accounts a total of 7 samples per each patient that progress (Figure 1).
  • Additionally, 20 patients without progression will be analyzed in order to find out if there are any differences in the mutational spectrum compared with those disease progression cases. The same time points that were taken into account for those cases that progressed will be considered for these non-progression cases.

A panel of genes including disease relevant regions of the following 40 genes will be studied:

ASXL1, ASXL2, BCOR, BCORL1, BRAF, CALR, CBL, CEBPA, CSF3R, CSNK1A1, DNMT3A, EZH2, ETV6, FLT3, GATA1, GATA2, IDH1, IDH2, JAK2, KIT, KMT2A (MLL), KRAS, MPL, NF1, NPM1, NRAS, PTPN11, RAD21, RUNX1, SETBP1, SF3B1, SMC3, SRSF2, STAG1, STAG2, TET2, TP53, U2AF1,WT1, ZRSR2.

Patients and related samples data will be registered in a unique database. All clinical data will be collected according to the parameters defined by the Spanish Group of Myelodysplastic Syndromes (GESMD). All patients enrolled in the project will be requested to fill and sign an informed consent form for research purposes approved by the Ethical Committee of the ICO-Hospital Germans Trias i Pujol (Badalona, Barcelona, Spain). All protocols will be in accordance to the Declaration of Helsinki and the national normative of confidentiality of the data (LOPD).

The bioinformatic analyses will be performed at Josep Carreras Leukaemia Research Institute (IJC Campus ICO-GTIP. Badalona, Spain). Due to the amount of data, each analysis needs to be run in a cluster computing center, and stored in a special storage system which is follows the current laws for data protection in Spain.

Medical subject headings
Myelodysplastic Syndromes

What participants receive

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

Study groups in NCT04251078
Study groupRoleWhat they receive
Myelodysplastic Syndromes - Progression cohortAccording to the literature (Greenberg et al, Blood. 2012), around 5-15% are expected to progress to high/very high-risk MDS subtype or to acute myeloid leukemia (AML). According to the total cohort of patients, it is expected that 20 of them would comprise this group and will be studied by targeted deep sequencing.
Myelodysplastic Syndromes - Non Progression cohort20 patients without progression will be analyzed by targeted deep sequencing in order to find out if there are any differences in the mutational spectrum compared with those disease progression cases.

What is being measured

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

  1. SF3B1 status in the whole cohort (n=200)

    SF3B1 gene will be analyzed by Sanger sequencing in all cases.

    Measured: 1 day

  2. Targeted deep sequencing analysis of MDS low risk cases that showed progression of the disease (n=20)

    Those cases that show progression of the disease will be retrospectively analyzed by NGS. Estimating that 10% of patients could progress, it is expected to include 10 new patients per year (during the two first years of the project) in the molecular analysis. This accounts a total of 20 patients after 2 years of follow-up.

    Targeted deep sequencing (panel of 40 myeloid related genes) will be performed in DNA from whole BM and PB paired samples at the moment of diagnosis and progression. Three PB follow-up samples in between will also be analyzed in order to track clonal dynamics. This accounts a total of 7 samples per each patient that progress.

    Measured: 1 day

  3. Targeted deep sequencing analysis of MDS low risk cases that remained stable (no progression of the disease) (n=20)

    20 patients without progression will be analyzed in order to find out if there are any differences in the mutational spectrum compared with those disease progression cases. The same time points that were taken into account for those cases that progressed will be considered for these non-progression cases.

    Measured: 1 day

Timeline

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

  1. First posted31 Jan 2020
  2. Study start1 Jan 2019
  3. Primary completion1 Jun 2025 (estimated)
  4. Study completion30 Jun 2025 (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
200 participants (estimated)
IDs, dates and publications
ClinicalTrials.gov ID
NCT04251078
Sponsor's protocol ID
N/A-NI-MDS-PI-13279
Status last verified
Feb 2025
First submitted
30 Jan 2020
Last updated
21 Feb 2025
Results posted
No
Data monitoring committee
No
FDA-regulated drug
No
FDA-regulated device
No

Questions about this trial

What is this clinical trial studying?

An observational study of Myelodysplastic Syndromes, run by Josep Carreras Leukaemia Research Institute at 1 site in Spain.

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 2 inclusion and 2 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 21 Feb 2025. 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 Spain. 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 Francesc Sole, PhD ((+34) 93 557 28 06, fsole@carrerasresearch.org), or a site near the patient. AzTrials does not enrol participants or take referrals.

What does the primary outcome measure?

SF3B1 status in the whole cohort (n=200) (time frame: 1 day). The study lists 3 primary outcomes in all. 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 21 Feb 2025.

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