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

NCT02587858 · Status: UNKNOWN · Type: OBSERVATIONAL · Enrollment: 300

Last updated 2020-10-08

No results posted yet for this study

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.

Conditions

  • Neurodegeneration With Brain Iron Accumulation (NBIA)

Sponsors & Collaborators

  • Oregon Health and Science University

    collaborator OTHER

  • Susan J. Hayflick

    lead OTHER

Principal Investigators

  • Susan J Hayflick, MD · Oregon Health and Science University

Eligibility

Sex
ALL
Healthy Volunteers
No

Timeline & Regulatory

Start
2015-04-30
Primary Completion
2025-04-30
Completion
2025-04-30

Countries

  • United States

Study Locations

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Read the full study record

This page highlights key information. For complete eligibility criteria, study locations, investigator contacts, and the full protocol, visit the original record on ClinicalTrials.gov.

View NCT02587858 on ClinicalTrials.gov