Burden of Disease Study In Patients With Transthyretin Familial Amyloidosis Polyneuropathy (TTR-FAP) orTransthyretin Cardiomyopathy (TTR-CM) And Caregivers

Study Results

Results available

Outcome measurements, participant flow, baseline characteristics, and adverse events have been published for this study.

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Basic Information

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Recruitment Status

COMPLETED

Total Enrollment

1 participants

Study Classification

OBSERVATIONAL

Study Start Date

2012-04-18

Study Completion Date

2016-07-18

Brief Summary

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This study is an online (web-based) or paper-based survey for patients with transthyretin familial amyloidosis polyneuropathy (TTR-FAP) and caregivers. The results will be used to describe the emotional, physical, and financial impact of having TTR-FAP or caring for someone who has the disease.

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Detailed Description

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Convenience sample of patients and caregivers recruited through patient advocacy groups. Convenience sample.

Conditions

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Transthyretin Familial Amyloidosis Polyneuropathy (TTR-FAP) Transthyretin Cardiomyopathy (TTR-CM) Familial Amyloid Cardiomyopathy Senile Systemic Amyloidosis (SSA)

Study Design

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Observational Model Type

OTHER

Study Time Perspective

CROSS_SECTIONAL

Study Groups

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Caregivers

Caregivers who are taking care of patients with TTR-FAP or TTR-CM. No drug will be administered; this is a non-interventional observational study.

No drug

Intervention Type OTHER

No drug.

Patients

Patients with TTR-FAP or TTR-CM. No drug will be administered; this is a non-interventional observational study.

No drug

Intervention Type OTHER

No drug.

Interventions

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No drug

No drug.

Intervention Type OTHER

No drug

No drug.

Intervention Type OTHER

Eligibility Criteria

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Inclusion Criteria

* Adults (ages 18-85 years inclusive) diagnosed with TTR-FAP or TTR-CM and experiencing symptoms or currently providing care for a patient with TTR-FAP or TTR-FAP