‘Rare disease studies require a spirit of innovation’: ARG

By Maggie Lynch

- Last updated on GMT

(Image: Getty/whuwhanfoto)
(Image: Getty/whuwhanfoto)

Related tags ARG Rare disease Greenphire

Atlantic Research Group implements Greenphire’s ClinCard and ConneX reimbursement solutions in an aim to ease the clinical trial experience for both sites and patients.

The rare and neurodegenerative disease, oncology, and immunology-focused contract research organization (CRO) Atlantic Research Group (ARG) selected Greenphire to streamline reimbursement for rare disease clinical trials.

Lyle Camblos, president at ARG, told us that for any given rare disease, which the Food and Drug Administration (FDA) defines as a condition that affects 200,000 people in the US, there may be only a handful of patients in the world available for the study. “As a result, often the burden, unfortunately, falls on them to travel great distances to participate in clinical studies,” Camblos said.

ARG will begin using the clinical trial financial software from Greenphire, specifically its reimbursement solution, ClinCard​, and its travel solution, ConneX, to improve patient retention and experience, as well as to further accommodate individuals​ with limitations and special requirements. These restrictions could be because of child care needs, difficulty flying due to location or condition, or even financial constraints.

Catherine Allen, project manager at ARG said, “Rare diseases and cancers are very challenging for families, especially when the patients are children. To ask patients to be in charge of international travel and logistics while caring for a child enduring a disease, treatment, and suffering is simply too much.”

Through the ClinCard and ConneX solutions ARG will provide its trial participants and stakeholders with reduced administrative work to enable an easier trial experience.

Allen said that with the implementation of Greenphire’s services patients and their families will be able to focus on the trial and not on the travel.

“Knowing that logistics related to travel and lodging are being taken care of by Greenphire removes this burden from patients and their caregivers, freeing them to focus on the trial and treatment,” ​Allen told us. 

To address additional challenges in rare disease clinical trials, ARG established a strategic advisory board​ in 2017. The board works with patient advocates, and former executives at rare disease-focused biotechs to discuss the clinical trial process and develop solutions.

Paul Bishop, CEO of ARG added, “Rare disease studies require a spirit of innovation because often there is no established blueprint to address challenges.”

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