Rare Disease Report

Teleconsulting: Bridging the Gap for Rare Cancer Patients

JULY 03, 2018
Krista Rossi
While all cancer patients face individualized challenges, those with rare tumors experience additional hardships. With prevalence so low, physicians tend to have a harder time providing diagnosis and treatment to these patients as their experience in this community may be limited.

This gap in appropriate resources is only further underscored by low numbers and a lack of heterogeneity in cases, which makes it difficult to conduct the translational and clinical research needed to develop new drugs in the space.

However, the European Network for Rare Adult Solid Cancer (EURACAN) has launched the European Reference Network (ERN) in March 2017, a virtual network comprised of health care providers throughout Europe who are striving to bridge this knowledge gap in rare disease. Teleconsulting will serve as the core business of the effort.

"The key here was to evolve past the reference centre logic towards the concept of a referring network where the reference centres would serve as hubs that provide a wide range of services and concentrate experience in a particular field, while the connection with established national networks would ensure wide geographical coverage," said Anna Maria Frezza, MD, a medical oncologist at the Istituto Nazionale Tumori in Milan, in statement. The Instituto Nazionale Tumori is the center coordinating the sarcoma domain within the EURACAN network.

Ultimately, with this information technology platform, all health care providers will have access to the expertise of reference centers, regardless of their location; this will help reduce inequalities in patient outcomes. Furthermore, patients will be spared burdensome travel for treatment, which can be taxing both financially and physically.

"In addition to providing medical assistance, ERNs are also committed to fostering research, promoting public health surveillance, as well as ensuring education for physicians and information for patients,” added Dr Frezza.

Thanks to the EURACAN network, the ESMO Sarcoma & GIST Symposium in Milan, Italy, was held in an improved context for patients with rare cancers; about 450 experts from around the world came together to discuss management of sarcomas, which account for less than 1% of all adult solid cancers.

Sarcomas are a type of rare cancerous tumor that poses unique and significant challenges due to their rarity, which was made evident in the example of Gloria, an Ewing's sarcoma patient originally prescribed anti-inflammatory drugs for a swollen and painful knee that escalated to intermittent fever.

It wasn’t until seven months had passed and her symptoms worsened that she find the Associazione Paola, a national association in Italy that strives to improve sarcoma patients’ treatments and quality of life by providing them information and referrals to centers with appropriate clinical expertise. This resource finally led her to contact the right resources and secure an accurate diagnosis and treatment.

"The ESMO Sarcoma & GIST 2018 Symposium is definitely a highlight for the sarcoma community among the many educational events on rare cancers for physicians," said Ornella Gonzato, president and founder of Associazione Paola. 

By providing vital resources to health care providers, teleconsulting through the EURACAN network strives to encourage research, promote public health surveillance, and provide the education that is needed for physicians to improve patient outcomes.

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