Sharing Experiences: The Most Valuable Resource in Rare Diseases

At the American Society of Clinical Oncology (ASCO) 2018 annual meeting in Chicago, Owen A. O’Connor, MD, PhD, Director of Center for Lymphoid Malignancies at Columbia University, emphasized the importance of sharing experiences among physicians and researchers in the rare diseases like peripheral T-cell lymphomas.

Dr O’Connor: Experience, which every good doctor relies on in terms of thinking about how to take care if a patient, is not something you can rely on for treating orphan diseases because no one really has it—[only] a handful of people in the world. And so, finding ways to communicate—not just one perspective, but a variety of perspectives from people who see a lot of the disease, and trying to blend that experience from multiple investigators and multiple physicians in a way that will provide some light, it won’t provide a definitive path, but it can provide some light on how doctors that may see these diseases much more rarely [can help] manage these diseases.

From an education point of view, I think it would be very, very interesting if there were forms on the internet where experts with an expertise in the disease (not merely sharing slides on their favorite research topic) [can] share experiences and discuss a case vignette. ‘How would you do this? What have you done when you’ve [seen] this [disease]? What have you seen when you have executed different types of treatments?’

Trying to share that broader experience is really critical. I think it’s this shared experience that we all have in managing the [rare] diseases that’s going to help inform all of us what to do next.

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