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Ed Forum 2016

Clinical Trials

Cancer clinical trials are research studies that involve people who either have or are at risk of getting cancer. The goal of these studies is to find better ways to diagnose, treat, and prevent cancer so that people can live better and longer. The studies also give researchers more information about reducing cancer risk in healthy people.

Treatment guidelines are developed from the results of clinical trials. Doctors across the U.S. and around the world follow these guidelines so that they can deliver the best possible treatment to their patients.

Every WM treatment used today is a result of clinical trials and the people who took part in them. That is why it is so important to continue this research. The IWMF supports clinical trials because it recognizes that major advances in the treatment or cure of WM can occur only with the participation of WM patients in clinical trials. 

Additional information about clinical trials can be found here .

The IWMF Clinical Trial Policy can be found here.

The Leukemia & Lymphoma Society (LLS) provides one-on-one clinical trial assistance to WMers in the US by offering a service to patients and their families called the Clinical Trial Support Center.

The Center is staffed by skilled information specialists who gather your relevant health details and match up those details with available clinical trials. You can work with an LLS Clinical Trial Specialist who will personally assist you throughout the entire clinical trial process. Clinical Trial Specialists are registered nurses with expertise in blood cancers. Your Clinical Trial Specialist will:

  • Speak with you to understand your goals and help you decide if a trial might be right for you
  • Help you to understand the clinical trial process, including your rights and obligations as a participant
  • Ask you for details about your diagnosis, including your genetic profile, past treatments and responses, your current physical condition, and past medical history that might impact your eligibility for certain clinical trials
  • Understand how your financial situation, insurance coverage, support network, and ability and willingness to travel far distances might impact your choice of clinical trials
  • Utilize an understanding of your unique situation to provide you with a list of appropriate clinical trials to discuss with your healthcare team
  • Guide you in your efforts to enroll in a clinical trial, including connecting you with trial sites
  • Be available to support you throughout your experience in the clinical trial.

Information about the LLS Clinical Trial Support Center, including how to interact with a Clinical Trial Specialist, can be found here. Additional information can also be obtained by calling: 1-800-955-4572 (Monday-Friday, 9 a.m. to 9 p.m. ET).

If you want to do your own search for clinical trials for WM, you can go to the National Institutes of Health clinical trials website, www.clinicaltrials.gov (link is external). Go to the Status box and select either “Recruiting and not yet recruiting studies” or select “All studies” if you want to include trials that are already closed. Go to the Condition or disease box and begin to type “Waldenstrom”, and you should see a dropdown menu of conditions to choose from that include Waldenstrom Macroglobulinemia. To narrow your search, you can use the Other terms box if you already know the drug name or the clinical trial identifier number (NCT number) you want to view, and you can use the Country box for a dropdown list of trials by country. Some country options also allow you to search by city and/or state. After you have filled out all the boxes you want to use for your search, click on the solid blue Search button.

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Did you know?

Did you know the IWMF has funded over $12,200,000 worth of WM research since 1999? All of this funding has come from members like you!