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



Status:Recruiting
Healthy:No
Age Range:Any
Updated:5/30/2018
Start Date:April 2015
End Date:April 2025
Contact:Alison C Freed, BA
Email:freeal@ohsu.edu
Phone:503 494 6838

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Trial Summary
Trial Overview
Inclusion Criteria
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 be (1)
collecting information about how symptoms and findings in NBIA change over time and (2)
identifying 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 years to electronically
complete a set of rating scales as related to their NBIA disorder.


Inclusion Criteria:

- Diagnosis of PKAN, PLAN or BPAN confirmed gene testing.

- Ability to access a computer with internet services approximately once every 6 months
for up to 5 years to enter data.

Exclusion Criteria:

- Individuals who are not fluent in reading and communicating in English.
We found this trial at
1
site
Oregon Health and Science University
3181 Southwest Sam Jackson Park Road
Portland, Oregon 97239
503 494-8311
Principal Investigator: Susan J Hayflick, MD
Phone: 503-494-6838
Oregon Health and Science University In 1887, the inaugural class of the University of Oregon...
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from
Portland, OR
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