Exploring genetic and environmental factors in ALS and FTD using twins

Genetics and Environment iNtersection In the Amyotrophic Lateral Sclerosis - FrontoTemporal Dementia Spectrum: an Italian Twins Cohort studY With a Multi-Omics Approach

Observational Azienda Ospedaliero-Universitaria di Modena · NCT06595212

This study is trying to see how genes and the environment affect the development of ALS and Frontotemporal Dementia by looking at twins who have different experiences with these diseases.

Quick facts

Study typeObservational
Enrollment45 (estimated)
Ages18 Years and up
SexAll
SponsorAzienda Ospedaliero-Universitaria di Modena Academic / other
Locations3 sites (Modena, Italy and 2 other locations)
Trial IDNCT06595212 on ClinicalTrials.gov

What this trial studies

This observational study aims to investigate the contributions of genetic and environmental factors to the onset of Amyotrophic Lateral Sclerosis (ALS) and Frontotemporal Dementia (FTD) by studying discordant twins. Participants, consisting of monozygotic or dizygotic twins, will be followed for two years at specialized centers in Italy, providing biological samples for multi-omics analysis. The study seeks to uncover the heritability gap in ALS/FTD and assess how environmental exposures influence disease progression and phenotypes. By correlating biological signatures with clinical features, the research aims to identify protective factors and risk profiles associated with these neurodegenerative conditions.

Who should consider this trial

Good fit: Ideal candidates include adults over 18 years old who have a monozygotic or dizygotic twin, with at least one twin diagnosed with ALS or FTD.

Not a fit: Patients who are unwilling to participate in assessments or donate biological samples, as well as pregnant or breastfeeding women, may not benefit from this study.

Why it matters

Potential benefit: If successful, this study could lead to a better understanding of the risk factors for ALS and FTD, potentially guiding prevention and treatment strategies.

How similar studies have performed: While the approach of studying twins in relation to ALS and FTD is not widely tested, similar studies exploring genetic and environmental interactions in other conditions have shown promising results.

Eligibility criteria

Show full inclusion / exclusion criteria
Inclusion Criteria:

* Age \>18 yrs
* Presence of MZ or DZ twins in the family both willing to participate in the study and able to provide informed consent
* At least one twin is affected by ALS as defined by Gold Coast Criteria (Shefner et al., 2020) and/or by FTD as defined by Strong and colleagues (Strong et al., 2017)
* Subjects able and willing to comply with study procedures as per protocol
* Subjects able to understand, and capable of providing informed consent at screening visit before any protocol-specific procedures

Exclusion Criteria:

* Unwillingness to perform assessments as stated in the protocol at least during baseline visit for both twins
* Unwillingness to donate biological samples collected at periphery (lumbar puncture excluded) for both twins
* Women who are pregnant or breastfeeding

Where this trial is running

Modena, Italy and 2 other locations

Study contacts

How to participate

  1. Review the eligibility criteria above with your treating physician.
  2. Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
  3. Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.
Conditions ALSFTDtwincohort
Last reviewed 2026-06-13 by the Find a Trial editorial team. Information on this page is for educational purposes and is not medical advice. Always consult qualified healthcare professionals about clinical trial participation.