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AIM at Melanoma’s major research project, the International Melanoma Tissue Bank Consortium (IMTBC), is the first collaborative fresh frozen primary melanoma tissue bank in the world. The most important element of the tissue bank is—not surprisingly—the tissue itself. As you might have read in previous articles, primary melanoma tumor tissue is not regularly banked, and it is even more rarely banked fresh frozen.

But what makes IMTBC even more valuable is all the information and samples that accompany each fresh frozen primary tumor tissue, such as the patient’s blood samples and medical record (all privacy protected). One piece of this accompanying information is an Epidemiological Survey—we call it the Epi Survey for short. The Epi Survey has about 40 questions that ask such things as the patient’s skin color; eye color; indoor tanning experience; outdoor sunburn experience; and family history of cancer. Each piece of tumor tissue, therefore, is accompanied by this treasure trove of corresponding data.

Once a critical mass of tissues and data are collected from a diverse patient population, the researchers can look at these fresh frozen primary melanomas and the data to find medical signs or indicators of outcomes, called biomarkers. For example, a researcher can look at all the primaries that ended up metastasizing vs. those that did not spread. Are the tissues that metastasized genetically different? Do they have different biomarkers? Another example: A researcher can look at all the primaries that ended up metastasizing and for which treatment was unsuccessful—the patient died—and compare those primaries to the primaries of patients who responded to treatment. How are those melanomas different? Do they have different biomarkers? And so on.

The Epi Survey adds a new dimension to this process, as the information in it goes beyond that which is in the typical medical record. The Epi Survey will allow researchers to ask and answer questions that may yield important insights for all of us.

We know, for example, that those with blue and green eyes are at higher risk for melanoma. But what will we find when we compare primary tissue samples from people who have blue and green eye color with tissue samples from people with other eye colors? Does lighter eye color have any impact on metastases—in other words, do more people with lighter eye color see their disease advance? Or is there no correlation between eye color and disease advancement?

Another query could be related to those who have used indoor tanning devices and have developed melanoma. Are there differences in the primary tumors of those who have used indoor tanning devices and those who have not? Is there any difference in disease advancement between the two groups?

The Epi Survey asks specific questions about the patient’s own cancer history as well as the patient’s family cancer history, which may yield information we’ve never considered. For example, a researcher can look at tissue from those who have no known cancers in their immediate blood relatives and compare it with tissue from those who have melanoma in their immediate blood relatives. Are the primaries different—are there different biomarkers? Researchers will also be able to question how cancers may be connected. Are the primary tumors different for those who have no known cancers in their immediate blood relatives and those who have, for example, breast cancer or pancreatic cancer?

Another question could be asked about patients who have two melanoma primaries: What differences can be found in these primaries—if any?

Researchers can also work in the reverse direction. As they look at a large number of primary tumor tissues, they may find specific genetic features in those, and different, but also specific genetic features in those that metastasized (spread). Then they will look to see if they can tie any of those genetic features back to something that is found in the Epi Survey. In other words, researchers will be able to look at the molecular causes of cancer or of metastases in these tissues and may be able to correlate those findings back to features on patients’ skin or in their histories, which may give us a new risk factor to make people aware of. The benefit, in this case, would be a new angle for clinical prevention and awareness.

The possible questions are endless because of the sheer amount of data that accompanies these primary tumor tissues.

You may have heard the saying Tissue is the Issue. And it is: As noted earlier, researchers cannot easily find fresh frozen primary melanoma tissue. But data is also the issue. And together—tissue and data—they are a goldmine for researchers.