Clin2
NCT05522374Likely a fitRecruiting

Study registry for people with suspected or confirmed NBIA

Neurodegeneration With Brain Iron Accumulation (NBIA)Pantothenate Kinase-associated Neurodegeneration (PKAN)Beta-Propeller Protein-Associated Neurodegeneration (BPAN)Mitochondrial Membrane Protein Associated Neurodegeneration (MPAN)Fatty Acid Hydroxylase-associated Neurodegeneration (FAHN)Kufor Rakeb SyndromeNeuroferritinopathyAceruloplasminemia

Part of Brain & nervous system, Genetic & congenital clinical trials.

This trial is a research registry that collects information from people who have suspected or confirmed NBIA (a rare inherited brain movement/nerve condition). It helps researchers learn more about the condition and how it affects people, which may support future studies.

Summary written for real people, not researchers, by Clin2.

Phase
N/A
Enrollment
2,000 people
Ages
Any age
Study type
Observational

Who can take part

  • You have NBIA that is suspected or confirmed
  • You are willing to join and participate in the registry
  • If you are not willing to participate, you cannot join

View the official record on ClinicalTrials.gov

Quick eligibility check

Answer a few plain-language questions, based on this study's own requirements, to get a preliminary sense of fit.

Similar studies

Other trials that look related to this one.

NCT06596746Recruiting
Tracking markers for neurodegenerative diseases

This study tracks changes in people with Parkinson's disease, other movement disorders, or cognitive decline to find better ways to measure disease progression.

Cassino, Frosinone
NCT06844877Recruiting
Italian NCL Registry for Batten disease

This trial is creating a registry (a secure database) for people with a confirmed genetic diagnosis of NCL (Batten disease). The goal is to collect information over time to help researchers understand the disease better and plan future treatments.

Pisa
NCT02402426Enrolling by invitation
Online brain health registry for adults

This study is building an online registry where adults can share information to help researchers find people for future brain research. Joining may help future studies get the people they need.

San Francisco, California
NCT04680130Enrolling by invitation
Study of brain, genetics, and clinical symptoms in neurodegenerative illness

This study looks at how your symptoms, brain imaging (MRI), and genetic factors relate to neurodegenerative conditions. It may help researchers better understand what causes these illnesses and how to classify them.

Rochester, Minnesota
NCT05434572Recruiting
Neuromuscular disease biobank for research samples

This trial is building a biobank (a secure research collection) from people with neuromuscular diseases, their families, or healthy volunteers. By joining, you help researchers study these conditions and improve future treatments.

Richmond, Virginia
NCT03333200Recruiting
Study of genetic brain diseases over time

This trial follows people with genetic neurodegenerative (brain-wasting) disorders over time to better understand how the condition changes. The goal is to learn patterns that could help future treatments or care plans.

Pittsburgh, Pennsylvania

Hear when a new Neurodegeneration With Brain Iron Accumulation (NBIA) trial opens

We’ll email you when one opens — at most once a week, no account needed, unsubscribe anytime.