Needs of ALS Patients With C9orf72 Mutation and Their Caregivers
ConditionAmyotrophic Lateral Sclerosis
Trial statusRecruiting
Trial phaseNot listed
Trial typeObservational
Biological sexAll
Age18+
SponsorIstituto Auxologico Italiano
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.
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 of identifying actionable steps to improve the quality of life for both.
Eligibility criteria
Qualifiers
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
Disqualifiers
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
Caregiver of patient with diagnosis of ALS with mutation C9orf72 (C9Pos), who participates in this study
Trial design
Treatments tested in this trial
- Survey for ALS patients
- Survey for Caregivers
Treatment groups
208 Participants
are divided into 2 treatment groupsSponsors and collaborators
Source ClinicalTrials.gov