For African Americans Living with Multiple Myeloma. Is a Clinical Trial Right for Me? 7 Useful Things You Should Know
“Will I have access to the latest treatments?” 6 Empower yourself Choosing to participate in a clinical trial is an important and personal decision and one that you should consider carefully for both the benefits and risks involved. Fortunately, there are resources and opportunities for input to help you make an informed decision. Here are a few helpful sources to consult and things to consider: Family first Talk to your family and/or social network (someone who will help you and be an advocate for your healthcare) about being a part of a trial. Leverage your team of healthcare providers Build the relationship between your personal physician and your multiple myeloma specialist to understand if you could be a candidate for a clinical trial. If you are, ensure all your healthcare providers know about your participation in the clinical trial. You are in charge Understand that you may choose to leave the clinical trial at any time and for any reason. Research independently Empower yourself by taking advantage of the online resources available to you, which include, but are not limited to: • theMMRF.org Multiple Myeloma Research Foundation website • myeloma.org International Myeloma Foundation (IMF) website • LLS.org Leukemia & Lymphoma Society website for patients and healthcare providers • myelomacrowd.org Myeloma Crowd, a division of the CrowdCare Foundation, website for patients Celgene does not own or operate these websites and does not take responsibility for the content they provide. “How do I decide whether to participate in a trial?” 4 Trial design and treatment Clinical trials are divided into di erent stages, called “phases,” with key points illustrated below People participating in multiple myeloma clinical trials receive access to new, innovative treatments that are being evaluated, or the current standard of care treatment – the best practice available today. In phase 3 clinical trials, y u may be randomly assigned to receive either the new treatment being tested or the other best treatment available. You will not know which treatment you are receiving but either way, you will receive appropriate care. • As with other forms of therapies, the new treatment may not work for you specifically, even if it helps others. • You will be se n regularly by your healthcare team as par f t e defined protocol (the establishe rules) for the study. At each step of the trial, data is collected about each participant – these results are looked at carefull y for e ectiveness (e cacy) of the treatment as well as for side e ects (safety) of the treatment. If early results show that one treatment has a clear significant benefit over the other treatment, the study will be stopped and all volunteers can receive the more promising treatment. PHASE 2 Determines if a treatment is safe (eg, side e ects) Figures out the most appropriate drug dosage Continues to monitor for side e ects Begins to examine whether the treatment is e ective PHASE 1 PHASE 4 After a treatment is approved for use Patients in a “real life” setting PHASE 3 Aims to prove whether a treatment is e ective Tr atments are often compared to the best treatment available Myeloma support groups Education Programs Your patient advocate Treatment centers Clinical trials Empower Yourself Multiple Myeloma Resources 2 3 1 5 Notes 7
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