Results from an annual conference that took place late last year have revealed the extent of symptoms suffered by those with HNPP. Sufferers say that pain is the number one issue that plagues them.
On November 3rd, nearly 100 participants gathered at the Samberg Conference Center on the Massachusetts Institute of Technology (MIT) campus in Cambridge, MA, for the Hereditary Neuropathy Foundation (HNF) Patient-Centered Charcot Marie-Tooth (CMT) / Hereditary Neuropathy with Liability to Pressure Palsies (HNPP) Pain Summit. Ninety per cent of the 115 patients that took part in the study linked to the conference, indicated that their pain had a moderate to severe impact on their quality of life.
The meeting brought together people with hereditary neuropathies and their families, caregivers, clinicians, researchers, funding agencies, sponsors, leading pain experts, and the pharma industry to provide an in-depth look at chronic pain within the CMT/HNPP community, including its impact on quality of life.
The one day conference also offered expert sessions as well as breakout session, primarily led by sufferers, with a focus on identifying gaps that are hindering patient care in neuropathic and musculoskeletal pain, diagnosis and outcome measures to support development of therapies.
Consequently, HNF partnered with the voice-powered survey platform True Reply to record patient responses to a five-question survey in their own voice. A total of 621 responses were recorded by the participants over a 30-day period.
The questions asked included:
- What type of Charcot Marie-Tooth or inherited neuropathy do you have?
- Do you experience disease-related or other types of pain?
- Please describe your pain symptoms as descriptively as possible.
- Please describe how your pain impacts your daily quality of life.
- How do you currently manage your pain?
HNF founder and CEO, Allison Moore, said that the results were “enlightening”.
Moore said: “Hearing about our patients’ experience with pain in their own words was both enlightening and heartbreaking at the same time.
“Our patients are hurting badly in so many ways, and they need guidance and protocols from their healthcare providers to help manage their pain so they can go about their daily lives as pain-free as possible.”
“The voice of the CMT patient can no longer be ignored when it comes to the protocols, treatments and therapeutics that are being developed to treat this disease.”
Allison Moore, Hereditary Neuropathy Foundation CEO
Other key takeaways from the study showed that 76 per cent of patients are managing their pain on their own, with a combination of over-the-counter medications and alternative therapies, while 63 per cent described their pain as numbness, sharp, burning or stabbing.
Jose Cotto, founder and CEO of True Reply, said: “The ability of True Reply to quantitatively analyse patient responses in real-time while also giving researchers and clinicians access to qualitative data such patient voice tone, cadence and stress levels is a real game changer for Patient Reported Outcome (PRO) studies”.
HNF are expected to continue their partnership with True Reply for their 3rd Annual Patient-Centered CMT Summit on September 29, 2018.
Moore said she hopes that as more sufferers speak out about their experiences, the better therapies may be: “We are looking forward to using technologies like True Reply to help us tell our patients’ stories in their own words so we can address their immediate quality of life issues while waiting for desperately needed therapeutics to move through the pipeline and be approved for commercial use.”
She adds: “The voice of the CMT patient can no longer be ignored when it comes to the protocols, treatments and therapeutics that are being developed to treat this disease”.
Find out more about the next summit here.