The FA Patient Voice Initiative: capturing the patient perspective on living with Friedreich’s Ataxia

Maria Picone
Maria Picone

Health Initiative Overview

FARA partnered with TREND Community to generate evidence for their Patient-Focused Drug Development Meeting with FDA.

TREND Community performed an analysis of the Friedreich’s Ataxia Facebook group discussions. This social data analysis aimed to provide the community’s perspectives on the questions posed by FDA.

The analytics engine summarized the data, discovĀ­ered topics of discussion relevant to each question posed by FDA and counted how many times they occurred, and performed a sentiment analysis.

Click here to read the full Community Voice Report.

Meeting Topic 1

How do the symptoms and clinical features of disease impact patient lives, and which are most important to patients? Understanding progression of disease.

Meeting Topic 2

Patient perspectives on available therapies for Friedreich’s Ataxia. What are you currently doing to manage your symptoms?

Understanding Progression of Disease

A longitudinal analysis of a single participant was performed to provide insight into the potential to generate personal natural histories from anecdotal data. The amount of data for a single patient was very small; we expect deeper insights into the participant’s perspective on disease progression if more social data can be accessed. Note: this analysis was performed on the public Facebook Group only.

Discovering Unmet Needs

During our analysis, we explored the data to discover unmet needs of the FA Community (focused specifically on what people cannot afford), as well as things that people in the FA community are trying to improve their quality of life. Following is a list of some of the items we found:

  • E-books make reading easier
  • Antioxidants
  • How to make money and receive SSI
  • Stem cell therapy (controversial)
  • Having children
  • Best manual wheelchair is a Tilite Titanium
  • Best power chair is a Tilite Titanium fitted with a power assist