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Information for Patients Who May be Eligible to Participate

  • Study of Precursor Hematological Malignancies to Assess the Relationship between Molecular Events of Progression and Clinical Outcomes

    An important note: Taking part in the Center for Prevention of Progression of Blood Cancers (CPOP) research study is voluntary. Instead of being in this research study, you may continue to obtain your clinical care without participating in the study. Your decision not to participate will not affect your clinical care in any way.

    The research study seeks to perform research tests on specimens obtained during the course of clinical care, bank the specimens and material derived from the specimens, and link the specimen data to clinical data. It also seeks to obtain blood and a buccal swab or mouthwash for germline genomic testing, bank this material and the DNA derived from it, share de-identified genomic data with other investigators or centralized repositories. Finally, it seeks to permit providers to see the results of these research tests and permit re-contact for potential treatment or clinical trial enrollment opportunities.

    The following patients are eligible to participate in this study:

    • Patients with Known or Suspected Precursor Hematological Cancer including the following subgroups of diseases:
      • Early MDS, including pathologically-confirmed MDS (IPSS Low/Int-1; IPSS-R Very Low/Low) and idiopathic cytopenias of undetermined significance (ICUS);
      • Myeloproliferative neoplasms (MPN);
      • Asymptomatic Multiple Myeloma and Waldenstrom Macroglobulinemia such as monoclonal gammopathy of undermined significance (MGUS) or Smoldering Multiple Myeloma (SMM or SWM);
      • Monoclonal B cell lymphocytosis (MBL);
      • Early stage asymptomatic low-grade lymphomas; or
      • Other precursor conditions or clonal genetic abnormalities of the blood/bone marrow that do not meet criteria for symptomatic hematological malignancy, or patients exposed to prior chemotherapies (e. g., alkylating agents, platinum derivatives, taxanes, topo-2 inhibitors, anti-metabolites, systemic radioisotopes)
    • Patients must be at least 18 years of age to participate in this research.
    • In accordance with NIH guidelines, women and members of minority groups and their subpopulations will be included in this protocol.
    What are the benefits of taking part in this research study?

    It is important to understand that this is not a clinical study being done to benefit you directly. Therefore, taking part in this research study may not directly benefit you. However, the information gained from your participation is likely to generate important information which will help future patients with blood and individuals at high risk of developing those diseases.

    Why is this research study taking place?

    Blood cancers occur when the molecules that control normal cell growth are damaged. Many of these changes can be detected by directly examining parts of the cancer or cells in blood. Several alterations that occur repeatedly in certain types of blood cancers have already been identified, and these discoveries have led to the development of new drugs that target those alterations. More remain to be discovered.

    The purpose of this research study is to perform these molecular analyses on your tissues (obtained from biopsies), blood, or other body fluids such as saliva or urine. Importantly, this study will use tissue specimens that have already been collected as part of your clinical care. Your tissue sample may be used to create a living tissue sample (called a "cell line") that can be grown in the laboratory. This allows researchers to have an unlimited supply of your cells in the future without asking for more samples from you.

    What kind of information could be found in this study, and will I be able to see it?

    These studies are being done to add to our knowledge of how genes and other factors affect cancer. We are gathering this knowledge by studying groups of people, and the study is not meant to test your personal medical status. For that reason we will not ordinarily give you the results of our research on your samples unless there is clear evidence of actions that could benefit your health.