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

What this study involves

The registry does not currently label this study as recruiting. Ask about its status before planning a screening visit.

Study type

Observational

Phase

Not applicable / not listed

Age range

11 months - Not specified

Sex eligible

All sexes

Healthy volunteers

Accepted

Participants

1836 Actual

These are starting points, not an eligibility decision. The research team must review the full requirements.

About the research

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 may be able to participate?

The list below is the sponsor’s full registry wording. It can include conditions, prior treatment, test results and other requirements. A match in search does not mean you qualify.

• INCLUSION CRITERIA:

On referral, persons \>= 11 months will be included only because of personal history, and persons \>=18 years can also be included because of personal or family history of the parameters listed below:

• A medical history of hematologic/ lymphoproliferative malignancy of an unusual type, pattern, or number or
• Known or suspected factor(s) predisposing to hematologic malignancy, either genetic and/or congenital factors (birth defects, metabolic phenotype, chromosomal anomalies or Mendelian traits associated with tumors), environmental exposure (medications, occupation, radiation, diet, infectious agents, etc.), or unusual demographic features (very young age of onset, multiple tumors, etc.)

Personal and family medical history must be verified through questionnaires, interviews, and review of pathology slides and medical records. For familial neoplasms, two or more living affected cases among family members are generally required, although in selected instances exceptions may be made, e.g., for WM, one case plus a living 1st degree relative with an autoimmune condition will qualify a family for further investigations.

Disease-specific considerations. Familial aggregation of any hematologic cancer(s) is eligible for study. Disease-specific procedures are outlined in appendices:

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

Ability of subject or Legally Authorized Representative (LAR) to understand, and the willingness to sign, a written informed consent document.

EXCLUSION CRITERIA:

• Referred individuals for whom reported diagnoses cannot be verified;
• Referred individuals who decline informed consent.

Study population

General population with a family history of cancer

Treatment, groups and participation

The registry may describe treatments and study duration without a complete visit calendar. Ask the study team for the exact schedule, procedures, risks, costs and alternatives. Keep your usual care plan unless your treating clinician tells you otherwise.

Assignment

Not reported

Masking

Not reported

What researchers are measuring

Outcome measures describe what is being studied. They are not proof that a treatment works.

Primary measures

Research locations (2)

The overall study status and a local site’s status can differ. Confirm that location’s availability before traveling.

2 locations

Study team and timeline

Lead sponsor

National Cancer Institute (NCI)

Study start

Jul 8, 2002 Actual

Primary completion

Not reported

Study completion

Not reported

First posted

Jun 7, 2002 Estimated

Last updated

Nov 10, 2026 Actual

Official study contacts

No central contact is listed. Check the locations and the official record.