Participating in breast cancer studies

How do you do that?

A central portal helps you find clinical trials that match your medical situation, even when those trials are taking place abroad. This portal exists thanks to two pioneers: bioengineer Mitchell Silva and nuclear medicine specialist Erard le Beau de Hemricourt. More than ten years ago, they founded Esperity (“hope” in Esperanto). Mitchell Silva, CEO of PatientCentrics: “We wanted to gather information about clinical trials in Belgium and beyond in one place and present it in easy-to-understand Dutch and French. This makes it easier for patients to find out what trials are available and which ones might be relevant to their situation.”

Not aware

Information about clinical trials is often highly fragmented. Official databases do exist, but they are not always easily accessible to patients. The European database contains information about clinical trials in various countries, but the information is extensive and provided in English. Medical jargon also poses a barrier. In addition, patients are not always aware of the options available to them. Those who search online do not necessarily find the trials that are relevant to their situation. This is particularly problematic for people with a rare condition. There might be a trial just across the border in which they could participate, but without the right information, they’ll never find out about it. Esperity is a portal for clinical trials covering a wide range of conditions, featuring a simple search function. Patient organizations can then share information about trials related to a specific condition that concerns them on their own websites. “Our goal is to reach as many patients as possible through various channels, while ensuring that the information provided is accurate and accessible.”

Multiple motives

Why do patients want to participate in a clinical trial? Silva: “That varies from patient to patient. Some people participate out of altruism, because they want to contribute to medical progress and help future patients. Others participate to gain access to an experimental treatment.” Not every breast cancer study is suitable for every breast cancer patient, and an experimental treatment does not always work better than current standard of care. “The doctor must always remain a key point of contact. Patients need guidance to understand what participating in a study entails, what conditions apply, and what risks and potential benefits are involved. The portal does not replace that conversation, but it can help you ask more specific questions and work with your doctor to determine whether there is a suitable study for you.”

More info:

Dr. Mitchell Silva will give a lecture on participating in clinical trials for breast cancer at our Patient Days.

On November 28 in Liège (https://www.pink-ribbon.be/fr/projets/journee-de-patientes) and on December 5 in Hasselt (https://www.pink-ribbon.be/en/projects/patientendag).