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Tissue Bank Study for Blood Cancer, a patient driven Clinical Trial

IWMF Tissue Bank Study, a Clinical Trial Update      10-18-2012

Making headway against the blood cancer Waldenstrom’s Macroglobulinemia (WM) is challenging. Because the population of WM patients is so small, we receive almost no share of research funds from either government agencies or pharmaceutical companies. The priorities of government agencies are set to accommodate the majority voters while those of the pharmaceutical companies are influenced by growth and profitability. In either case, research targeting an orphan disease will never be at the top of the list. It is up to us, members of the International Waldenstroms Macroglobulinemia Foundation (IWMF) to pool our resources to promote WM research. The amount of money already raised by this small Foundation in the course of fourteen years is quite remarkable and the need for such member support continues. But not all the needed resources are financial. There is another important way in which WM patients can support WM research: participate in clinical trials.

At the recent IWMF Ed Forum, Dr. Peter Martin of Weill Cornell Medical College spoke on “Choosing a Clinical Trial”.   Dr. Martin outlined the difference between trials that are observational and those that are interventional. Interventional trials perhaps more familiar to us are trials in which ‘the protocol’ (that is, the study plan) defines who can participate, what medications, dosage and the study’s length of time during which you adhere to some schedule of therapy such as recurring infusions or a pill-form drug.

Observational clinical trials, by contrast are studies based on data collected from patients with a particular disease such as WM.  These studies can yield a great deal of information about that disease but only when the data is abundant. By sharing our specific data we pool our resources in the support of WM research. There is one observational trial underway at the Dana-Farber Cancer Institute that will directly benefit WM patients. It is the Tissue Bank Study, funded by IWMF, by your money.  The Principal Investigator is Dr. Irene Ghobrial.

Before I describe how easy it is to participate in Dr. Irene’s Tissue Bank Study, let’s explore some similar projects cancer research. Our friends at the Multiple Myeloma (MM) Research Consortium funded by the Multiple Myeloma Research Foundation have had great success with their tissue bank program to help accelerate the development of novel agents that treat a similar blood cancer, multiple myeloma. This funding has produced incredible results fast tracking research and development of targeted agents that extend the lives of MM patients. The Stanford School of Medicine has several virtual tissue banks that focus on lymphoma and other cancers. 

After much careful, thoughtful research and some debate, it was logical that the IWMF would follow a similar path to support the establishment of a tissue bank for WM research. When the IWMF explored funding this project, Judith May, President of IWMF, said, “Its success depends on how willing WM patients are to donate blood and bone marrow for research.”  Today the project is progressing, but we need to step it up, we need more participants.

Participating in the IWMF Tissue Bank Study entails some effort from patient-participants but only at intervals. Over all, it is easy to do. There are a few simple steps that require your active involvement and co-ordination.  First, read about the Tissue Bank Study announced in the October 2010 issue of the Torch!  See www.iwmf.com/services/torch.aspx. Then follow the directions to Step 1, Step 2, and Step 3 below.

Step 1: All WM patients and family members reading this article should complete the questionnaire located at http://tinyurl.com/WM-Questions.  Your comprehensive confidential data is very helpful and becomes an important part of the research sample. Family members are considered the “control group” and their data serves as a standard sample by which experimental observations are measured. Print this questionnaire, fill it out, and mail it per the instructions.  Again, this is important because our small group can produce meaningful, actionable data based on good samples.

Step 2: Participants must sign a consent form to enroll. The consent form is located at http://tinyurl.com/WM-Patient-Consent.  Print the consent form, read it over and on page 10 you must initial certain items and sign and date.

Step 3: When the completed questionnaire and consent forms have been received at DFCI, you will be sent instructions for the collection of bone marrow and buccal (a scraping of cells from the inside of the cheek) samples. No extra bone marrow collections are required. Rest assured that bone marrow samples are collected only when a bone marrow biopsy is scheduled by your physician. The buccal cells will be collected only once. Collection kits and shipping instructions will be sent from DFCI.

That’s all there is to it. Complete the questionnaire and consent forms now and send them to DFCI. Then, when you are scheduled to have your next bone marrow biopsy, you must remember about 10 days ahead of time to make the arrangements with DFCI to have a collection kit sent to your physician before the scheduled biopsy. This is not really very complicated. Your physician will take a small sample of blood and marrow and express mail it (in the package you arranged to have sent) back to Dana-Farber Cancer Institute. The only complication is that you must remember to take the initiative and inform Dana-Farber in advance.

The IWMF Tissue Bank Study aims to create a large data sample from a small population. How are we doing so far? To date, a number of patients who visit DFCI have participated. In addition, many attendees at the IWMF Ed Forum signed up. So far, so good. But we need more participation. We can do it!  Let’s stack the cards in our favor!

At the recent IWMF Ed Forum, I had the opportunity to have a one-on-one breakfast with Dr. Robert Kyle, perhaps the most knowledgeable physician in WM circles.  I asked for his opinion concerning Dr. Ghobrial’s IWMF Tissue Bank Study.  Dr. Kyle said it was a great idea.  He said it would be very helpful but––adding this note of warning––he expected it would be very difficult to get our very busy physicians around the country to actively participate by seeking out patients to enroll.

So here is our challenge. Dr. Irene’s Tissue Bank Study needs our data. It is up to you, up to all of us, to be sure this is done.  Let us be proactive about good research! To continue to make great progress and to achieve the goals of this observational trial, I urge all readers to take my message seriously and participate now.

If you don’t have access to a PC and the Internet or if you have any difficulty accessing the questionnaire and consent forms on your computer, you can simply call Dr. Ghobrial’s Tissue Bank Study at Dana-Farber Cancer Institute, telephone 617 632 4218. If you'd like a .pdf copy of this article please click here.  


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