Needs of ALS Patients With C9orf72 Mutation and Their Caregivers
Recruiting
Observational Study
Amyotrophic Lateral Sclerosis
No Placebo Group
Every participant receives an active treatment — no one gets a placebo.
No Study Drug
Researchers observe your health over time — no experimental treatment is given.
At a Glance
- Age
- 18 and older
- Sex
- Any
- Study type
- Observational
- Participants needed
- 208 (estimated)
- Sponsor
- Istituto Auxologico Italiano · Other
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About This Trial
Individuals with Amyotrophic Lateral Sclerosis (ALS) carrying the C9orf72 HRE mutation (C9Pos) often exhibit different phenotypic traits compared to other patients (C9Neg), presenting a more aggressive form of the disease, with also a higher frequency of comorbidity with frontotemporal dementia (ALS-FTD) and a greater prevalence of family history of ALS and/or other neurodegenerative diseases.
Co…
Trial Locations
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Eligibility Criteria
ALS Patients:
Inclusion Criteria:
* Diagnosis of ALS with mutation C9orf72 (C9Pos)
* Age 18 years or older
* Fluency in Italian language
* Ability to understand the nature of the study and to reply to the questions in the online survey
* Informed consent signed
Exclusion Criteria:
* Clinically r…
Contacts