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Needs of ALS Patients With C9orf72 Mutation and Their Caregivers

Recruitingn/aAges 18 Years - anyAllIstituto Auxologico Italiano
NCT07302321 on ClinicalTrials.gov ↗
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In plain words

What the trial is, and whether it could suit you

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. Considering these characteristics (comorbidity with FTD and family history of ALS and/or other neurodegenerative pathologies) as factors that have their importance from an assistance point of view, both C9orf72 patients and their caregivers may have particular needs in several respects, and in this sense this investigation is configured. This survey aims to describe the various aspects related to the care and quality of life of C9orf72 ALS patients and their respective caregivers, with the goal o

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📋 Eligibility rules (as published)
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 relevant cognitive dysfunction * Incapacity to reply to at least half of the questions of the online survey * Hospital Anxiety and Depression Scale (HADS) ≥ 11 Caregivers: Inclusion Criteria: * Caregiver of patient with diagnosis of ALS with mutation C9orf72 (C9Pos), who participates in this study * Age 18 years or older * Preserved cognitive functions * Informed consent signed
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What it tests

  • Survey for ALS patients
  • Survey for Caregivers
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Where

3 sites
Istituto Auxologico Italiano IRCCS
Milan, Italy
IRCCS Ospedale San Raffaele
Milan, Italy
IRCCS Fondazione Mondino, Istituto Neurologico Nazionale a Carattere Scientifico
Pavia, Italy
🤝 Taking part is your choice, and you can leave at any time. Only the trial team can confirm you are eligible — always decide together with your own doctor.
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