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Tissue Bank - Participate in an Observational Clinical Trial

Making headway against the blood cancer Waldenstrom’s Macroglobulinemia (WM) is challenging. Because our 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 that targets an orphan disease will never be at the top of the list.

It is up patients, caregivers and advocates to pool our resources to promote clinical research for rare diseases. The amount of money already raised by Foundations such as the IWMF and MMRF over the last fifteen years is quite remarkable.  In spite of meaningful progress the need for member support continues. But not all the needs are financial.

There is another important way in which WM and more recently Multiple Myeloma (MM) patients can support research: participate in clinical trials. When Dr. Peter Martin of Weill Cornell Medical College spoke on “Choosing a Clinical Trial”. He 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, MM or Monoclonal Gammopathy of Undetermined Significance (MGUS) . 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 this research.

There is one observational trial underway at the Dana-Farber Cancer Institute that will directly benefit WM, MM and MGUS patients. It is the Tissue Bank Study.  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.

Participating in this Tissue Bank Study is easy to do.  Follow the directions in Step 1, Step 2, and Step 3 below.

Step 1: All WM, MM and MGUS 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 buccal (a scraping of cells from the inside of the cheek) samples.  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. This Study aims to create a large data sample from a small population.   Let us be proactive about good research! To continue to make great progress and to achieve the goals of this observational trial, I urge you to participate now. 

Please note: This original Clinical Trial has been updated to include MM, WM, MGUS, sMM and LPL patients.  Take a look at DFCI's Center for Prevention of Progression of Blood Cancers (CPOP).