NBIAready: Online Collection of Natural History Patient-reported Outcome Measures

Neurodegeneration With Brain Iron Accumulation (NBIA) Clinical Trial

Official title: NBIAready: Online Collection of Natural History Patient-reported Outcome Measures

Status Recruiting

Clinical Trial Summary

The purpose of this study is to learn more about Neurodegeneration with Brain Iron Accumulation (NBIA) Disorders. Data is being collected on three types of NBIA disorders:

Pantothenate Kinase-Associated Neurodegeneration (PKAN), PLA2G6-associated Neurodegeneration (PLAN) and Beta-propeller Protein-associated Neurodegeneration (BPAN). The study will (1) collect information about how symptoms and findings in NBIA change over time and (2) identify measures of NBIA that can be used in future clinical trials. Participants will follow links to a secure website every 6 months for a period of 5-10 years to electronically complete a set of rating scales as related to their NBIA disorder.

Clinical Trial Description

n/a

Related Conditions & MeSH terms

• Nerve Degeneration
• Neurodegeneration With Brain Iron Accumulation (NBIA)
• Pantothenate Kinase-Associated Neurodegeneration

• NCT number: NCT02587858
• Study type: Observational
• Source: Oregon Health and Science University
• Contact: Alison C Freed, BA
• Phone: 503 494 6838
• Email: freeal@ohsu.edu
• Status: Recruiting
• Start date: April 2015
• Completion date: April 2025