Khure Health and Friends of Cathryn Foundation Announce Partnership in the Fight Against Neuroblastoma

Khure Health to include Neuroblastoma clinical criteria in AI-enabled clinical intelligence platform.

We are pleased to announce our partnership with Friends of Cathryn Foundation (FRoC) to include neuroblastoma in Khure Health’s Rare Disease Clinical Intelligence platform. Through the platform, physicians will be able to more accurately identify patients who are potentially high-risk for this life-threatening pediatric cancer and get them on the right care pathway much earlier in the progression of the disease.

Neuroblastoma is a rare and aggressive form of pediatric cancer. It is the most common solid tumour that occurs in children outside the brain, as well as the most common tumour diagnosed in the first year of life. Approximately 50-70 new cases of neuroblastoma are diagnosed every year in Canada (800 in the United States). Neuroblastoma accounts for about 15% of childhood cancer mortality.

FRoC is a US-based non-profit which raises funds for research dedicated to less toxic and more targeted therapies for Neuroblastoma. FRoC Founder Susan Giusto gathered data from over 180 families to gain a better understanding of the range of symptoms experienced by neuroblastoma patients and worked with key opinion leaders to gain a comprehensive picture of diagnostic criteria for the disease, including a leading neuroblastoma advocate, Donna Ludwinski.

FRoC chose to partner with Khure Health to accelerate the identification of patients at risk of neuroblastoma, after discovering them through the Global Commission to End the Diagnostic Odyssey for Children with a Rare Disease.  Khure Health will now begin to develop an algorithm for neuroblastoma to add to the more than 50 rare diseases currently available on their clinical intelligence platform.  Leveraging the power of artificial intelligence, combined with the data in a physician’s EMR, Khure Health’s Clinical Intelligence Platform will screen patients against the clinical diagnostic criteria of neuroblastoma to identify those who may be at risk.

“The painful and confounding symptoms of neuroblastoma are often missed or misdiagnosed because most pediatricians will never see a case in their career – it’s that rare. Parents are their child’s best advocate and many witness the decline in their child’s behavior, growth and well-being for months before a medical provider may arrive at the dreaded diagnosis of neuroblastoma,” said, Susan Giusto, Founder, Friends of Cathryn Foundation. “We wanted to give parents a voice in the effort to more quickly and accurately diagnosis neuroblastoma so the child may receive treatment. With the development of this algorithm, Khure Health will combine the most frequently reported symptoms with medical expertise to assist the medical community as well as the families of extremely ill children. On behalf of parents of warriors, survivors, and angels, we’d like to express our gratitude to Khure Health.” 

“Almost every parent of a child with high-risk neuroblastoma can attest to the deeply traumatic journey to final diagnosis. This is an acute disease with rapid tumor growth. With the average onset in toddlerhood, these small children suffer horrific symptoms for weeks and months on end, including excruciating bone pain from metastases,” said Ms. Ludwinski. “Technologies like artificial intelligence powering Khure Health’s Rare Disease Clinical Intelligence Platform, can enable earlier diagnosis and save untold suffering for children.”

“Rare disease patients, including young children, are often bounced around the healthcare system while parents and physicians search for the correct diagnosis. When time to diagnosis is so important for a child to have a chance at a healthy life, Khure Health’s mission is to accelerate that process, help to end the suffering of rare disease patients and save lives,” said Don Watts, President, Khure Health Inc. “We are thrilled to be working with FRoC to utilize the power of our AI-enabled platform to help physicians rapidly identify children potentially at risk of neuroblastoma.”

Join our rare disease network and identify high risk, rare disease patients including children at risk of neuroblastoma.

Khure Health

Khure Health

Empowering physicians to identify and treat patients with rare and specialty diseases.

Related Posts