n-Lorem Foundation Collaborates with Across Healthcare to Develop a Custom Submission Platform for Physicians of Nano-rare Patients
16 April 2024 - 11:05PM
Business Wire
n-Lorem, a nonprofit Foundation, has collaborated with Across
Healthcare, a technology innovator, to develop a first-of-its-kind
submission platform and system that allows research physicians from
across the United States to submit applications for treatment for
their patients with nano-rare illnesses. Robust data on each
patient’s genotype and phenotype is required to enable the decision
as to whether their mutation will become a drug target in n-Lorem’s
discovery and development pipeline. As a non-profit, n-Lorem’s
mission is to discover, develop and provide treatment for free, for
life to the nano-rare patients that are selected after a thorough
internal and external application review process. This process
includes a physician application for their patient, evaluation of
the disease-causing genetic mutation and patient’s clinical
manifestations, and discussion with a team of external experts on
the Access to Treatment Committee (ATTC) to make recommendations on
acceptance.
“The n-Lorem team performs a comprehensive evaluation for every
individual affected by a nano-rare mutation seeking treatment
through our application platform. The ability to perform a robust
evaluation is driven by comprehensive and quality data-this is how
we determine whether we think we can help. In order to meet the
needs of nano-rare patients today and scale to meet an even larger
demand tomorrow, we have established an application system that was
designed to streamline the application process and ensure that
qualified research physicians are able to submit applications,”
said Sarah Glass, Ph.D., COO, n-Lorem Foundation.
n-Lorem’s submission portal has been designed to accommodate an
infinite number of applications over time. The user-friendly,
custom platform enables each physician to create a personal account
to be able to submit and track the progress of multiple
applications. It has also been created to ensure each application
comes from qualified physicians who are at institutions that are
committed to treating a patient with an n-Lorem ASO. The platform
and system have been designed to allow for real-time adjustments as
n-Lorem’s needs change and in the future will expand to accommodate
clinical data as well.
“When n-Lorem approached us about their unique platform needs,
we knew that we had to help,” said Jason Colquitt, CEO, Across
Healthcare. “Our dedication to rare disease communities coupled
with our expertise in developing technologies that connect rare
patients, caregivers, clinicians, and researchers, enabled us to
develop a flexible platform tailored to meet n-Lorem's current
needs and accommodate their future scalability as they extend their
support to a growing number of nano-rare patients. Our entire team
was enthusiastic about contributing to such a deserving
organization.”
“To date, we have evaluated more than 260 patient applications
and have accepted more than 120 nano-rare patient programs, each
application representing a potential new drug discovery effort,”
continued Dr. Glass. “Across Healthcare understood our unique needs
and built an innovative platform that will continue to grow with us
as we expand the number of people we are able to help. This will
help streamline the review process we complete on each application
because we know that they will be coming from physicians and
institutions that can work with us to develop a personalized ASO
therapy for their patient.”
About Across Healthcare
Established in 2012, Across Healthcare has earned a reputation
as a reliable partner, assisting numerous clients in
conceptualizing, designing, and implementing cutting-edge
technological solutions. With decades of collective healthcare and
clinical research expertise spanning various disciplines, the
Across Healthcare team excels in efficiently executing projects of
any scale. CEO Jason Colquitt, himself a rare disease patient, held
a vision to leverage the collective talents of the Across
Healthcare team to serve the rare disease community. This vision
materialized into the Matrix rare disease platform in 2014. Today,
Matrix provides support to 95 rare disease groups and foundations,
encompassing 236 rare conditions, and connecting patients and
families across more than 120 countries.
About n-Lorem
n-Lorem Foundation is a non-profit organization established to
apply the efficiency, versatility and specificity of antisense
technology to charitably provide experimental antisense
oligonucleotide (ASO) medicines to treat nano-rare patients
diagnosed with diseases that are the result of a single genetic
defect unique to only one or very few individuals. Nano-rare
patients describe a very small group of patients (1-30 worldwide)
who, because of their small numbers, have few if any treatment
options. n-Lorem Foundation was created to provide hope to these
nano-rare patients by developing individualized ASO medicines,
which are short strands of modified DNA that can specifically
target the transcripts of a defective gene to correct the
abnormality. The advantage of experimental ASO medicines is that
they can be developed rapidly, inexpensively and are highly
specific. To date, n-Lorem received more than 250 applications for
treatment with more than 120 nano-rare patients approved. n-Lorem
was founded by Stanley T. Crooke, M.D., Ph.D., former chairman and
CEO of Ionis Pharmaceuticals, who founded Ionis Pharmaceuticals in
1989 and, through his vision and leadership, established the
company as the leader in RNA-targeted therapeutics. Follow us on
Twitter, Facebook, LinkedIn and YouTube.
To learn more about n-Lorem’s mission at www.nlorem.org, and
please consider giving to n-Lorem to bring hope, possibility and
treatment options to these patients and families in need.
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version on businesswire.com: https://www.businesswire.com/news/home/20240416925771/en/
n-Lorem Contact: Amy Williford, Ph.D. Sr. Director of
Communications amy.williford@nlorem.org