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Ed Forum 2018

Participate in Clinical Trials

Clinical trials are a final and crucial step on the path to developing better treatments for patients. They offer hope for many people and an opportunity to help researchers find better treatments for others in the future. The decision to participate in a clinical trial should be a thoughtful process in which patients carefully evaluate many aspects of the clinical trial option. You can find out more about clinical trials here, while some items that you may want to include in your personal considerations for a clinical trial can be found here.

Historically, 85% of all clinical trials face delays, and 30% never get off the ground because of a lack of volunteers. But we have an opportunity to change that with the assistance and expertise of the Leukemia & Lymphoma Society (LLS). LLS provides one-on-one 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 clinical trial search, you can go to the National Institutes of Health clinical trials website, www.clinicaltrials.gov. To do a general search, begin typing Waldenstrom in the "Condition/Disease" Search box, and you should see a dropdown menu of conditions to choose from that include Waldenstrom macroglobulinemia. You can click on the box "Find a study to participate in" if you want to see only those trials that are currently recruiting participants, or you can click on the box "Search all studies" to see all clinical trials, including those that have not yet begun recruiting or that are now closed. You can narrow your search by using the "Country" Search box; if you choose the United States, an additional Search box will open to allow you to search by State. You can view trials of particular drugs or view an individual trial by its assigned NCT number if you use the "Other Terms" Search box.

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Did you know?

Did you know the IWMF has funded over $17,600,000 worth of WM research since 1999? All of this funding has come from members like you!