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wtATTR-CIAP Burden Study

Dissecting the neuropathic burden in wtATTR: its role in staging and burden of disease, and in differentiating from chronic idiopathic axonal polyneuropathy

medical-cross
Transthyretin cardiac amyloidosis
user
All genders
person-wave 18+
world
Recruiting now

Overview

Principal Investigator: Dr. Oscar Soto and Dr. Maria Bartkus

This is an observational study to assess the the burden of neuropathic involvement in wild-type transthyretin amyloidosis

Study details

Inclusion Criteria
  • At least 18 years of age
  • Ability to provide informed consent
  • Adult diagnosed with of ATTR by immunohistochemistry and TTR genetic testing without pathogenic variant. Tafamidis (+) and tafamidis (-) or Chronic idiopathic axonal polyneuropathy (CIAP)
Exclusion Criteria
  • Evidence of polyneuropahty of any cause or disorder commonly associated with polyneuropathy such as: diabetes mellitus, renal insufficiency, hypothyroidism, vitamin B12 deficiency, and paraproteinemia
Study Requirements

Day 1 Screening

  • Review of your medical record
  • Obtain informed consent
  • Phone interview with Dr. Bartkus Day 1 Baseline assessments- in Neurology Dept. at TMC
  • Questionnaire Administration • Nerve conduction studies
  • Quantitative sensory testing • Heart rate deep breathing
  • Quantitative Sweat Measurement System (Q-Sweat)
  • Cutaneous and Mixed Nerve Silent Period (CSP, MSP) Week 52 (1-year) Follow-up
  • Longitudinal assessment phone call (optional) 
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