THAOS for Investigators

Welcome to the Investigator Portal of THAOS.net. The Investigator Portal is intended to keep you up to date with THAOS activity, publications and new data.

THAOS Scientific Board Meeting

The THAOS Scientific Board met on 7-8 October 2017 in Rome, Italy, during the THAOS Investigator Meeting. The board focused their discussion on the following key areas:

  • Strengths and weaknesses of the registry
  • Developing a TTR-FAP Severity Score & Measures of Disease Progression
  • The latest understanding of disease progression based on THAOS

A full review of the meeting is available in the December Newsletter.

THAOS sites

The number of subjects enrolled in THAOS is increasing: there are currently over 4000 subjects enrolled in THAOS from 55 active sites in 17 countries worldwide. The THAOS sites with at least one patient registered in the survey can be seen here.

Information on safety reporting

All events and serious adverse events (SAEs) for all subjects should be entered into the adverse events page in THAOS. All SAEs for patients being treated with tafamidis should be reported to Pfizer using the SAE reporting form and faxing to Pfizer within the required reporting times, according to the Pfizer SAE reporting guidelines.

SAE reporting forms and instructions are available through Firecrest

Neurological examination

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Neurological examination

This video demonstrates how to undertake and record in THAOS sensory examinations that assess loss of nerve function and disease progression.

How to detect amyloid by aspiration of subcutaneous abdominal fat

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How to detect amyloid by aspiration of subcutaneous abdominal fat

A video showing how to detect amyloid by aspiration of subcutaneous abdominal fat, produced in association with the Groningen Unit for Amyloidosis Research & Development (GUARD) (www.amyloid.nl), is available to view here.

Natália Ferreira - Ophthalmologic signs and symptoms of TTR amyloidosis

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Natália Ferreira - Ophthalmologic signs and symptoms of TTR amyloidosis

This video describes the key ophthalmologic signs and symptoms of TTR amyloidosis

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The Investigator Portal of THAOS.net contains up-to-date information on THAOS activity, including:

  • Current data from the THAOS database, and archives of past data extractions
  • Updates on THAOS publications and activities at congresses and meetings
  • The THAOS Publication Proposal Form – submit your publication proposal form online
  • Spotlight interviews with THAOS Investigators

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