PatientsLikeMe Launches Virtual Trial for ALS Patients | Business Wire

October 27, 2016 - als

and The
Duke ALS Clinic
have only finished enrollment in a practical trial
designed to exam either Lunasin, a peptide found in soy and some cereal
grains, is useful or damaging to patients vital with amyotrophic
parallel sclerosis (ALS). The Lunasin Virtual Trial is a initial investigate of
a addition in ALS patients and follows a
examining a intensity to retreat ALS in ALSUntangled,
a website for clinicians, patients and researchers to explore
choice treatments.

Duke ALS Clinic Director and ALSUntangled Founder Richard Bedlack, MD,
pronounced he initial listened about Lunasin’s intensity from Mike McDuff, an ALS
studious who took a addition and gifted thespian improvements in
speech, swallowing and prong strength.

“I reviewed Mike’s annals and reports, and both his diagnosis and his
improvements seemed real,” Bedlack said. “Of course, Mike competence have
an ALS impersonate we don’t know how to exam for, or his physique competence have found a
proceed to kick ALS eccentric of treatment. But there is one more
possibility: his Lunasin fast competence have indeed worked. we was
compelled to pattern a investigate to provide other ALS patients with a same
fast to exam if anyone else improves.”

As partial of a trial, 50 participants will make 3 in-person visits
to a Duke ALS hospital to magnitude a supplement’s impact over the
march of a year-long study. They will also finish practical check-ins
as members of PatientsLikeMe any 30 days to refurbish their weight,
finish an analysis of their Lunasin regimen, and finish a ALS
Functional Rating Scale (Revised, ALSFRS-R), a widely-used
patient-reported outcome grown by PatientsLikeMe that allows
patients to see their illness course visually and in context.

Bedlack pronounced a study’s pattern is patient-centric and eliminates many
of a frustrations patients contend are fundamental in normal clinical
trials. The pattern also expected contributed to what Bedlack calls the
fastest enrollment of any hearing in ALS history: a practical hearing took
only over 5 months to fill.

“There are no placebos, and we done a inclusion criteria really extended so
that even ALS patients who can’t validate for other studies due to their
prolonged illness generation or use of a ventilator can qualify,” Bedlack said.
“We’re also tying a weight on a participants by assisting them
check in online from a comfort of home. And we’ve already published the
on a ALS Reversals website. We’re holding a completely
open proceed so that anyone, anywhere, can see a sum of what
we’re contrast and learn some-more about either this is helpful, harmful, or
does zero during all. we consider all of these factors done a hearing very
appealing to ALS patients.”

PatientsLikeMe began as a website for people vital with ALS to openly
share their practice with any other and investigate choice and
off-label treatments. Vice President of Innovation Paul Wicks, PhD, said
a company’s investigate concentration gave ALS patients a science-based platform
to guard themselves, get ideas from other patients, and play a more
active purpose in their possess healthcare. That concentration has also helped the
association furnish some-more than 30 published investigate studies on the
condition, including a 2011 observational investigate in Nature
that refuted a formula of a 2008 clinical trial
on a efficiency of lithium carbonate on ALS. More recently a company
has worked with Bedlack to investigate a magnitude of ALS plateaus and
reversals. Findings from that investigate were recently published
and in a Mar 2016 imitation book of a biography Neurology.

“The work we’re doing with a Duke ALS Clinic continues a concentration on
scholarship that is driven by and for a unanswered needs in a ALS
community,” Wicks said. “If we can strap a energy of online
technologies to some-more fast control trials, we’ll be means to conduct
many some-more experiments with patients from around a world.”

Anyone holding Lunasin outward of a Lunasin Virtual Trial is invited to
alone lane their practice on PatientsLikeMe during

ALS is a degenerative commotion inspiring top engine neurons in the
mind and reduce engine neurons in a mind branch and spinal cord.
Symptoms embody on-going weakness, atrophy, fasciculation,
dysphagia, and contingent stoppage of respiratory function.

Study Design Methodology
The Lunasin Virtual Trial is a
12-month, widely inclusive, mostly virtual, single-center, open-label
commander hearing utilizing a chronological control group. Participants will be
asked to pointer in or register for an comment on
with a assistance of a investigate coordinator and will be given a welcome
parcel that includes a one piece outline of a study, a checkup
checklist, and a initial month of a sum 12-month supply of Lunasin.
User IDs compared with participants’ PatientsLikeMe comment will be
available by a investigate coordinator and common with investigate staff at
PatientsLikeMe. After a initial in-clinic visit, participants will be
asked to enter a following information online: weight, Lunasin investigate drug
fast evaluation, and their ALSFRS-R score.

About PatientsLikeMe
is a studious network that improves lives and a real-time research
height that advances medicine. Through a network, patients connect
with others who have a same illness or condition and lane and share
their possess experiences. In a process, they beget information about the
real-world inlet of illness that assistance researchers, pharmaceutical
companies, regulators, providers, and nonprofits rise some-more effective
products, services, and care. With some-more than 400,000 members,
PatientsLikeMe is a devoted source for real-world illness information
and a clinically strong apparatus that has published some-more than 80
investigate studies. Visit us during
or follow us around a blog,
or Facebook.

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