Plain-English translation of NCT04880356 on ClinicalTrials.gov ↗ · Source last updated · Translation generated · How we translate trials
This is a long-term study that gathers medical information from adults who have rare inherited neurological diseases affecting the brain, nerves, or metabolism. Researchers are collecting both past medical records and ongoing health information over a ten-year period to better understand how these ultra-rare conditions develop and progress. By tracking patients over time, doctors hope to learn more about disease patterns and improve care for people living with these conditions.
Ultra-rare inherited neurological diseases are so uncommon that very little is known about how they progress or how to best treat them. By collecting detailed medical information from many patients over time, researchers can identify patterns and better understand what to expect, which could eventually lead to better treatments and care strategies.
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If you join, you'll have at least one visit per year at the Carlo Besta Neurological Institute in Italy, where doctors will review your medical history and perform standard tests to track how your condition is changing. These tests may include movement and balance assessments, brain imaging, or nerve function tests depending on your specific diagnosis. The study will continue for up to ten years, with your medical care following normal clinical practice.
AI-generated summary from trial data · Jul 9, 2026 · Not medical advice
Italy
Sponsor
Fondazione I.R.C.C.S. Istituto Neurologico Carlo Besta
Enrollment target
~100 participants
Started
March 2021
Primary completion
March 2031
Age range
18 Years and older
Last updated on clinicaltrials.gov in November 2024.
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Central contact
Ettore Salsano, MD
Fondazione I.R.C.C.S. Istituto Neurologico Carlo Besta
Tell us you're interested and we'll help connect you with the research team. We'll walk you through what to expect first — no email needed to get started.