Does Newly Launched 'Lymphoma Hub' Offer Patients Anything?

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In the event that you missed it, the non-profit Italian professional lymphoma research organization La Fondazione Italiana Linfomi (FIL), together with grant money from drug maker Celgene Corporation and Professor Massimo Federico have launched The Lymphoma Hub.

The Lymphoma Hub bills itself as:

… A global network dedicated to providing a trusted online resource to improve knowledge and understanding of lymphoma. Its goal is to expedite learning through the sharing of expertise and to disseminate the latest news and information to healthcare professionals worldwide.

Says Federico, who serves as a professor of medical oncology at the University of Modena and Reggio Emilia, one of the oldest and most respected universities in all of Europe:

I am very pleased to announce the birth of the Lymphoma Hub and to hold the role of coordinator of such a group of internationally recognized lymphoma experts, who are devoted to improving knowledge and understanding of lymphoma in healthcare professionals worldwide.

But is it really just for healthcare professionals? Or can patients get something out of it too?

Lymphoma Hub News and Articles

This section presents recently published findings from medical journals and other sources and is relevant to those patients and caregivers who are accustomed to reading medical literature and can reasonably follow it.

Lymphoma Hub Clinical Trials Search

One of the primary features of Lymphoma Hub is a clinical trials search. The user is given two pull-down menus: one for indication (diagnosis) and one for country.

Currently the indication pull-down offers a search for only 20 subtypes, and among them you will find the usual suspects: Anaplastic Large Cell, Burkitts, CLL, DLBCL, Follicular, Hodgkin's, Mantle Cell, Marginal Zone, Peripheral T-Cell, Sezary Syndrome and SLL, among others.

I did a search for angioimmunoblastic T-cell lymphoma trials in the United States and found that the only recruiting study currently underway for this subtype is actually an NCI study of a two-drug combination against patients with a wide variety of relapsed or recurrent NHLs. A link to the ClinicalTrials.gov web site was included.

When I tried less obvious searches, like follicular lymphoma trials in Slovakia I got nothing, but that's not the fault of the Lymphoma Hub.

Lymphoma Hub Expert Panel

Within the Hub is the online community known as the Lymphoma Expert Panel, which is presumably as it sounds. I was unable to gain access to the Expert Panel, which is a good thing. If I ever manage to gain access, you can probably disregard the Hub altogether. To paraphrase Groucho Marx, any lymphoma expert panel that would accept me as a member is not an expert panel I'd want anything to do with.

Lymphoma Hub Steering Committee

According to the web site,

All content [at Lymphomahub.com] is created under the guidance of the Steering Committee of world-leading lymphoma experts.

Offhand, of the 11 members of the Steering Committee, I recognized a handful: I know the name Rebecca Auer but I can't tell you why; Frenchman Bertrand Coiffier I recognize from his strong association with the cooperative Groupe d’Etude des Lymphomes de l’Adulte (GELA); Nathan Fowler I recognize because he works at MD Anderson down in Houston; and the name Simon Rule is familiar to me from his work in mantle cell lymphoma.

I thought I recognized Ulrich Jäger but I think that was just wishful thinking on my part, hoping or assuming he had some role with the German lymphoma study groups I so admire.

But really, whether or not I recognize them means next to nothing. As for the head of the committee and co-founder of the Hub, Massimo Federico, I had this vague recollection of him being associated with some recent controversy that I couldn't recall … until I did a Google search. Among other achievements, Dr. Federico undertook an eight day hunger strike last year as Director of the Medical Oncology and Lymphoma Unit at Modena Cancer Center. What exactly the strike was about, I can't say. At least he can bring the drama, we know that much.

Lymphoma Hub: Patient-Friendly?

Is the Lymphoma Hub patient-friendly? Of course not. Medical societies are by their nature exclusionary. They're like the origins of Masonry; for centuries, rock cutters had it good because everything was made of rock from the pyramids on down through the Gothic cathedrals and so on, and it made sense to protect trade secrets. If everyone knew how to cut rock, the value of those skills would be diminished.

This isn't so today, at least not in medicine. The internet hasn't created a generation of self-surgeons or diagnostic wonders who don't need doctors. What the internet has done is created a venue where it's possible to have as many eyes looking at problems as possible, which (almost) always means that conclusions can be made to be water-tight.

The Lymphoma Hub doesn't really conform to that but at least patients have access to trials, to reviews, to recent papers, and to schedules of upcoming events related to lymphoma. They could also get this information elsewhere, so whether the Hub has anything truly valuable to offer to patients remains to be seen. As it stands, however, they aren't mentioned on the site and appear to be little more than case studies and afterthoughts.

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