CATEGORIES: Research
voice activated technology

HNF Partners with True Reply, the Future of Data Collection: Voice Activated Technology (VAT)

by | Dec 8, 2018 | 0 comments

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  • Accessible and innovative new platform allows for HNF to capture the patient’s experience with CMT in their own words
  • Respondents call into a toll free number where they are asked a series of questions
  • Data is then processed with Artificial Intelligence powered analytics to reveal telling insights
  • Pilot study was launched in 2017 at HNF’s Patient-Centered CMT/HNPP Pain Summit (funded by PCORI’s Eugene Washington Engagement Award #EAIN-7238) where patients were asked to use one word to describe their disease. PAIN was the #1 response
  • Internal Review Board (IRB) approved study through HNF’s patient registry, GRIN, captured 292 patient testimonies in their own voice and 27 of these testimonies were presented to the FDA during the Externally-led PFDD Meeting

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So go ahead and speak up.

YOUR VOICE HAS NEVER BEEN MORE POWERFUL THAN NOW!

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Building Awareness on CMT and Supporting the Patient Community – HNF Announces Support from Pharnext

by | Aug 19, 2014 | , , | 1 Comment

HNFpharnext recently entered into a partnership with the French biopharmaceutical company, Pharnext, to help raise awareness of Charcot-Marie-Tooth (CMT) disease and support the CMT patient community through several initiatives. Building awareness is key! Pharnext’s support will assist HNF in distributing HNF’s CMT Update quarterly newsletter, enhancing the Global Registry for Inherited Neuropathies (GRIN), setting up activities for CMT September Awareness Month in the US and strengthening the CMT Inspire Community.

Quality of Life and CMT Research

by | Jul 7, 2014 | | 4 Comments

Did you know that 95% of clinical trials fail? There are multiple causes, most related to efficacy or safety, which obviously can be harmful and risky for patients. The risk-reward of enrolling in trials is a judgment call based on the devastating effects of disease related to quality of life (QoL) or life-threatening disease. With CMT, the risk-reward is more of a challenging question for many, as CMT in most cases is non-fatal.

Help us answer questions that your doctors and the CMT Research Community aren’t too sure about.

by | May 19, 2014 | | 0 Comments

Did you know that you can become part of a community in therapy development and further research for all forms of CMT and inherited neuropathies? The mission of the Global Registry for Inherited neuropathies (GRIN) is to collect clinical and genetic information from patients with ALL forms of Charcot-Marie-Tooth (CMT) and other related rare and ultra rare inherited neuropathies.

Hot off the press

by | Feb 28, 2014 | | 0 Comments

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New Study on CMT Type 2B

by | Feb 12, 2014 | | 6 Comments

If we are to learn more about CMT and the effectiveness of rehabilitation it is worth asking the patient and their caregiver. A recent Italian study by Padua et al recently described a survey of CMT patients and caregivers and their perspectives and perceptions of rehabilitation efficacy and needs.

Allison Moore is going to be published!

by | Sep 6, 2013 | , | 0 Comments

HNF’s CSO (Chief Scientific Officer), Sean Ekins wrote a blog about his work with Allison Moore and her two “fighter Mom” friends Lori Sames and Jill Wood. He named his blog: “Rare disease heroes – Extraordinary collaborators we should be listening too.” Sean helped my friends and I write a paper called: “Multifaceted roles of ultra rare and rare disease patients/parents in drug discovery.” YES, Allison Moore is going to be published! It will be in Drug Discovery Today, soon. The link to the reprint is below.

HNF-WVU-NIOSH Study update:

by | May 9, 2013 | | 0 Comments

We are pleased to update our readers on the progress of the WVU-NIOSH study, “A Bi-Directional Translational Model of Exercise Training in the Treatment of Charcot-Marie-Tooth Disease”

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