Active — Not RecruitingNot Applicable

Clinical, Laboratory and Epidemiologic Characterization of Individuals and Families at High Risk of Hematologic Cancer

United States1,836 participantsStarted 2002-07-08

Plain-language summary

Background: * Individuals may be prone to develop blood or lymph node cancers (leukemia or lymphoma) for a variety of reasons, including genetic predisposition to these cancers, environmental exposures or other medical conditions. * Studies of people and families at high risk of cancer often lead to clues about their cause that may also be important regarding the sporadic occurrence of these cancers in the general population. * Identifying genetic or environmental factors that play a role in the development of these diseases may be important in developing prevention trials, screening programs and treatments. Objectives: * Describe the cancers and other conditions in families with blood or lymph node cancer. * Find and describe genes that may cause blood and lymph node cancer, and understand how they work in families. * Use laboratory methods to try to determine if it is possible to identify who is at highest risk of blood or lymph node cancer. * Test how genes act with other factors to alter the risk of disease, its severity or its manifestations in families. Eligibility: * Individuals of any age with a personal or family history of a blood or lymph node cancer. * Individuals with a personal or family history of medical conditions or environmental exposures that may predispose to blood or lymph node cancer. Design: * Participants complete questionnaires about their personal and family medical history and provide consent for researchers to review their medical records and pathology materials related to their care and those of deceased relatives with blood or lymph node cancer, tumors, or other related illnesses for whom they are the legally authorized representative. * Participants donate a sample of blood or cheek cells, or a lock of hair for genetic studies. * Patients may also be evaluated at the NIH Clinical Center by one or more of the following specialists: cancer doctor or blood specialist, medical geneticist, research nurses or clinical social worker. They may have blood and urine tests and a cheek swab or mouth wash to collect cheek cells. Some patients may also be asked to have x-rays and routine imaging, such as CT scans or ultrasound tests, cell surface markers, skin biopsy, and, with special consents, bone marrow biopsy, MRI or PET scans, apheresis or fluorescein angiography and photography.

Who can participate

Age range

11 Months

Sex

ALL

See this in plain English?

AI-rewrites the medical criteria so a patient or caregiver can understand them. Always confirm with the trial site.

Inclusion criteria

. Chronic lymphocytic leukemia (CLL)
. Waldenstrom macroglobulinemia (WM)
. Non-Hodgkin lymphoma (NHL)
. Hodgkin lymphoma (HL)
. Mixed/miscellaneous hematologic and lymphoproliferative diseases

Questions worth asking your doctor

Bring these to your next appointment. They're a starting point for a shared conversation — not a sign you qualify or a recommendation to enrol.

1This study is focused on characterizing families at high risk of blood cancers like CLL, Waldenstrom macroglobulinemia, and lymphoma — does my personal or family history suggest I might fit the profile they're studying, and would my doctor recommend I discuss it with the research team even though they're no longer actively recruiting?
2Since this trial is in 'active not recruiting' status, does that mean the study is still following people who are already enrolled, and could my family's health history still be relevant to future research coming out of this work?
3The study is tracking the natural history and clinical patterns of these blood cancers over time — what does that actually mean for someone who participates, in terms of how often they'd need to be seen, what tests might be involved, and how much of a long-term commitment it would be?
4Because this is a natural history and characterization study rather than a treatment trial, it wouldn't directly change my treatment plan — so how would my doctor suggest I use this kind of research participation alongside decisions about my actual care?
5Given that several of my family members may be at risk for these same conditions, would my doctor recommend that relatives also speak with a specialist about genetic or familial risk assessment, separate from whether this particular study is an option?

Generated to help you prepare — always confirm anything about your own eligibility and care with the study team and your doctor.

Questions for the trial coordinator

The trial coordinator is the person who runs the study day to day. These cover the practical side — logistics, costs, and what taking part would actually mean for your life. The study team confirms whether you meet the criteria; these are questions to ask, not a sign you qualify.

1What does taking part actually involve week to week — how many visits, where, and how long does each one take?
2What costs are covered by the study, and what might I have to pay for myself, including travel, parking, or time off work?
3What happens during screening, and what happens if the study team confirms I don't meet the criteria after those tests?
4Who pays for the scans, blood work, and other tests the trial requires — the study, my insurance, or me?
5How will being in the trial affect my regular care, and will my own doctor stay informed and involved?
6Can I leave the trial at any point if I change my mind, and what would happen to my care if I do?

A starting point for the conversation — always confirm anything about your own eligibility, costs, and care with the study team and your doctor.

What they're measuring

Clinical Spectrum and Natural History

Timeframe: Ongoing

Trial details

NCT IDNCT00039676

SponsorNational Cancer Institute (NCI)

Sponsor typeNIH

Study typeOBSERVATIONAL

View on ClinicalTrials.gov More Waldenstrom Macroglobulinemia trials