What do ALS patients and their families really need? a new study aims to find out.
NCT ID NCT07302321
First seen Jan 05, 2026 · Last updated May 10, 2026 · Updated 19 times
Summary
This study surveys 208 people with ALS who have a specific genetic change (C9orf72 mutation) and their caregivers. The goal is to learn about their care, support, and quality of life to find ways to improve both. No new treatments are tested; instead, the study gathers information to guide better care.
Disclaimer
Read more
Show less
This is a summary of
the original study
.
Summaries may miss details or leave out important information. Before applying or accepting participation, make sure you have read and understood the full study. Curemydisease.com takes no responsibility whatsoever for anything missed, misunderstood, or acted upon as a result of our summary — we know it does not capture everything.
This is a summary of the original study . Summaries may miss details or leave out important information. Before applying or accepting participation, make sure you have read and understood the full study. Curemydisease.com takes no responsibility whatsoever for anything missed, misunderstood, or acted upon as a result of our summary — we know it does not capture everything.
Get updates
Get notified about this study
Sign up to get updates when this study changes or when new studies for AMYOTROPHIC LATERAL SCLEROSIS are added.
By submitting, you agree to our Terms of use
Contacts and locations
Show contact details
Enter your email to view the contact information for this study.
By submitting, you agree to our Terms of use
Study contacts
-
Contact
Phone: •••-•••-•••• Email: •••••@•••••
-
Contact
Phone: •••-•••-•••• Email: •••••@•••••
Locations
-
IRCCS Fondazione Mondino, Istituto Neurologico Nazionale a Carattere Scientifico
NOT_YET_RECRUITINGPavia, Italy
Contact Email: •••••@•••••
-
IRCCS Ospedale San Raffaele
NOT_YET_RECRUITINGMilan, Italy
Contact Email: •••••@•••••
-
Istituto Auxologico Italiano IRCCS
RECRUITINGMilan, Lombardy, 20145, Italy
Contact Phone: •••-•••-•••• Email: •••••@•••••
Conditions
Explore the condition pages connected to this study.