In 2008, it was clear that the research community needed to build a bridge that would connect the science and medicine of melanoma and other rare cancers. As all things begin, two people from Holden Comprehensive Cancer Center at the University of Iowa met to discuss how to make the bridge reality and the Melanoma and Sarcoma Tissue Repository was born. This repository contains both tissue samples and relevant information about the participants from whom they were obtained. This formed a critical structure for interactions among clinicians, scientists, epidemiologists and others.

Over the last five years, we have initiated 47 projects asking key questions about the fundamental nature of melanoma which can also apply to other cancers. The repository now serves as a pillar for research at the Holden Comprehensive Cancer Center. Let’s meet some of the key experts in this important initiative. We said, “Well there’s so many questions, so many ideas, so many people and clusters and scientists that are out there. How can we get them all together in one little group and that’s where we came up with the idea of maybe, maybe we should have a patient center tissue bank. It’s sort of like creating a small little coral reef that brings clusters of scientists together and says, “Hey, what if we clustered around this particular question and then we asked it across multiple different samples or patient data, patient information?” and then tried to hone in on that. I don’t actually have a whole lot of faith in any single scientist. But I have very strong faith in the scientific enterprise and I think we’ve seen that with success even in the terrifying sickness that is melanoma in recent years from molecular analyses.

There’s now a drug called Vemurafenib, which is very effective against tumors that have a particular mutation. And where did that drug come from? It came from the scientific enterprise. And what does that scientific enterprise need? It needs samples from the generous patients you’ve mentioned. I echo what you said, I believe in the scientific enterprise, I don’t believe in one particular scientist. I do believe that you need an incredible amount of information before you can draw conclusions that are important and building that resource that houses, it’s an expensive venture, it takes a lot of maintenance. But it’s really built on the freedom that patients can give it.

It’s built on the fact that you have to inform the patient about what it means that you’re, what you’re going to do to them and it’s the free will to say, “Here is my sample, please take it and help somebody else.” We’ve actually had people reach out to us groups of people interested in rare tumors, that haven’t been collected that we’ve had collected. This has helped us branch out nationally as well and participate in something called the genome atlas project. Which is a large project sequencing genes across different types of cancers. I think you know probably know more about it than I do. But we were a participant because of this particular resource. Yeah and this has been an important nation effort. It took a major investment on the part of the federal government through the N.I.H.

To do this. One thing that differentiates this resource from that one is that the resource here has a much greater depth of clinical information and goes forward in time where as what was done with the TCGA was sort of capture the sort of diagnosis, was captured but there is very little data in many cases on what actually happened to the patient. Did they respond to the therapy they were give? How did their disease progress over time? And that is I think a key differentiating factor with the resource that is being built here. So that’s one of the 47 projects that this Iowa melanoma research fund is supporting, and let me ask you Mike, was that a very expensive project, a and b, how else might you have found funding? Were there lots of other places you could have gone to find funding for your project? Yeah well ultimately we have this funded from the NIH there was a grant that we applied for, Mo is a co-investigator on, and so we have some funding from the government to do that, but the preliminary data that seeded that idea, you know you have to show the NIH that there’s a good chance that something that you’re interested in might pay off and that seed funding was helped out from some of the money philanthropic funds that were developed around melanoma and you know, that’s one of the things that you’ve been really successfully… And your grant was strengthened by, you mentioning the repository — they wouldn’t have said that this is possible had you not told them “well in Iowa we have this resource.

It’s linked to clinical data. We have approvals to obtain, the blood from the patients directly and therefore we can do these samples and we have the capacity to do that. And when you applied, that was one of the strengths that made your application much stronger. What I can see is that you know, with this resource, more projects will come out, and it’s — it’s endless. Could you get that same information from your tissue model or your zebra fish model or your mouse model? It strikes me that there’s nothing replaces those patient samples. I mean there’s no substitute. You have to have that.

And it’s an invaluable resource. Unlike one idea about what might be going on in cancer which may or may not be wrong, we have to have those ideas and test them out, this coral reef that you describe goes on in perpetuity and can support many ideas over time, and ultimately I think have potentially a greater impact than any one study — Any one study or any one scientist. So what do you really mean to keep this going? You know I think I need the people who are already giving us the tissue to keep giving the tissue. You know. I think any kind of support that we receive builds on support that we are already having. It’s gunna go really far. And I think having this resource and maintaining it is really key. Every dollar counts. And no one should ever dismiss how far that dollar can go.

We don’t know what this resource is going to be in the future. We don’t know what it’s going to house. Technology is increasing as well so the idea is that we may be able to capture more than we have and looking into the future it would be really good to say that we did this in Iowa and this is what, what came out of it. I mean these questions, they may not be their basic simple questions but they’re driving these patients and they come with these questions to me and I don’t know how to answer them.

I come to you for answers. Yeah, and we don’t necessarily know how to answer all of them but this resource gives you a tool to actually do some of that and I think over time — It empowers us to get together and think about it. And it’s patient centered. You know it’s truly patient centered because they’re the ones who are the free will behind saying “Yes, I’ll give you my tissue”