Non-Hodgkin's LymphomaNCT00131014
Establishing a Tumor Bank in Families With Multiple Lymphoproliferative Malignancies
An observational study of Non-Hodgkin's Lymphoma and Hodgkin's Disease, run by Dana-Farber Cancer Institute at 1 site in United States.
Trial summary
The purpose of this study is to investigate possible genetic factors that contribute to the development of lymphomas. The databank will be used to determine whether familial lymphomas have unique genetic characteristics different from sporadic lymphomas and to attempt to identify a gene that confers an increased risk… Read more about this study
- Who is it for?
- Ages 18 years and older
- Conditions the study is for
- Non-Hodgkin's Lymphoma, Hodgkin's Disease, Leukemia, Lymphocytic, Chronic
- How many people
- 1,500 participants
- Where
- 1 siteUnited States
- Study dates
- 9 Aug 2004to Jan 2033
- Phase
- Observational
- Are there results?
- Not yet: the study is under way
Key requirements
Who can take part, as listed by the sponsor. Only the study team can confirm whether you are eligible, so take this list to your doctor.
- Ages 18 years and older
- All sexes
- No healthy volunteers
- Adult, Older adult
Study population: Group 1: Next of kin of a relative who has died from lymphoma Group 2: Subjects who have a next of kin diagnosed with lymphoma and/or CLL Group 3: Subjects who have had or have non-Hodgkin's lymphoma, CLL or Hodgkin's disease and had a relative who also had lymphoma or CLL
Who may be able to join
- Any individual diagnosed with non-Hodgkin's lymphoma or Hodgkin's disease or chronic lymphocytic leukemia (CLL), who has a 1st degree relative (parent, sibling or child) with a lymphoproliferative disorder; or families in which the individual has a lymphoproliferative disorder, and an unusual clustering of frequent or premature solid tumors is also observed.
- Family members of the individual, either affected or unaffected with lymphoma, who are contacted by the individual and agree to participate in the study.
- Deceased family members may be included in the study. Public records such as death certificates may be used to confirm the history. Consent for medical records or tissue blocks will be obtained from the deceased family member's next of kin. The hierarchy of relatives defined as next of kin is spouse, offspring, parents and siblings. Archived tissue samples may be used for genetic research.
- Age > 18 years
Who cannot join
- Subjects without a family history of lymphoma
Trial locations and contacts
1 site in 1 country. Contact the study team or a site near you to ask about taking part.
United States1 site, 1 recruiting
- Recruiting
Dana-Farber Cancer Institute
Boston, Massachusetts, 02115
Jennifer R. Brown, MD, PhD, 617-632-6692, jennifer_brown@dfci.harvard.edu
Jennifer R. Brown, MD, PhD
About this study
Official title: Establishing a Tumor Bank and Initial Analysis of Germline and Tumor-Related Genetic Alterations in Families With Multiple Lymphoproliferative Malignancies
The purpose of this study is to investigate possible genetic factors that contribute to the development of lymphomas. The databank will be used to determine whether familial lymphomas have unique genetic characteristics different from sporadic lymphomas and to attempt to identify a gene that confers an increased risk of lymphoma.
Read the detailed description
- Patients who participate will be asked to complete detailed family and medical history questionnaires initially, with a follow-up questionnaire every year.
- Patients will be asked to supply a blood sample and possibly a mouthwash sample, both of which can be done by mail.
- Patients will be asked to consent to the release of their lymphoma tissue block for the purposes of the study.
- Patients will be given letters of invitation for their affected relatives to invite them to participate.
- Conditions
- Non-Hodgkin's Lymphoma, Hodgkin's Disease, Leukemia, Lymphocytic, Chronic, Lymphoproliferative Disorders
- Keywords
- Non-Hodgkin's Lymphoma, Hodgkin's disease, Chronic Lymphocytic Leukemia, Lymphoproliferative disorder, Genetics
- Medical subject headings
- Lymphoma, Non-Hodgkin, Hodgkin Disease, Leukemia, Lymphocytic, Chronic, B-Cell, Lymphoproliferative Disorders
What participants receive
What participants receive. In a randomised study each person is assigned to one group by chance.
| Study group | Role | What they receive |
|---|---|---|
| Next of Kin of deceased subj by lymphoma | Next of Kin of deceased subject by lymphoma | |
| Subject unaffected by lymphoma | Subject unaffected by lymphoma | |
| Subject affected by lymphoma | Subject affected by lymphoma |
What is being measured
The primary outcome is the main question the study is designed to answer.
Genetic factors that contribute to the development of lymphomas and CLL
Genetic factors that contribute to the development of lymphomas and CLL
Measured: Indefinite
Timeline
From the start of the study to its completion; the mark is today. Estimated dates are the sponsor’s plan.
- First posted17 Aug 2005 (estimated)
- Study start9 Aug 2004
- Primary completionJan 2033 (estimated)
- Study completionJan 2033 (estimated)
Resources
- Official record on ClinicalTrials.govThe registry entry this page is built from, with its full change history.
- Other trials for Non-Hodgkin's LymphomaStudies of the same condition, open and under way.
- More trials run by Dana-Farber Cancer InstituteThe sponsor's other registered studies.
- What the trial phases meanHow a treatment moves from first tests in people to approval.
More details
For doctors and researchers: how the study is designed, who runs it, and its registry IDs.
Study design
- Study type
- Observational
- Observational model
- Family based
- Time perspective
- Prospective
- Enrolment
- 1,500 participants (estimated)
Sponsor and investigators
- Lead sponsor
- Dana-Farber Cancer Institute
- Sponsor type
- University, hospital or other
- Responsible party
- Principal investigator, Jennifer R. Brown, MD, PhD, Dana-Farber Cancer Institute
- Investigators
- Jennifer R. Brown, MD, PhD, Principal investigator, Dana-Farber Cancer Institute
IDs, dates and publications
- ClinicalTrials.gov ID
- NCT00131014
- Sponsor's protocol ID
- 04-165
- Status last verified
- Oct 2026
- First submitted
- 15 Aug 2005
- Last updated
- 13 Oct 2026
- Results posted
- No
Study at a glance
From the registry record, last updated by the sponsor on 13 Oct 2026. Recruitment status is as the sponsor reported it: confirm with the study team.
- Official title
- Establishing a Tumor Bank and Initial Analysis of Germline and Tumor-Related Genetic Alterations in Families With Multiple Lymphoproliferative Malignancies
- ClinicalTrials.gov ID
- NCT00131014
- Acronym / sponsor ID
- 04-165
- Conditions
- Non-Hodgkin's Lymphoma, Hodgkin's Disease, Leukemia, Lymphocytic, Chronic, Lymphoproliferative Disorders
- Keywords
- Non-Hodgkin's Lymphoma, Hodgkin's disease, Chronic Lymphocytic Leukemia, Lymphoproliferative disorder, Genetics
- Study type
- Observational
- Recruitment status
- Recruiting
- Enrolment
- 1,500 participants (estimated)
- Lead sponsor
- Dana-Farber Cancer InstituteUniversity, hospital or other
- Study start
- 9 Aug 2004 (actual)
- Primary completion
- Jan 2033 (estimated)
- Study completion
- Jan 2033 (estimated)
- First posted
- 17 Aug 2005 (estimated)
- Results
- Not posted in the source record
Clinical summary
The research question as the sponsor registered it. This describes what the study plans to test, not what it found.
The purpose of this study is to investigate possible genetic factors that contribute to the development of lymphomas. The databank will be used to determine whether familial lymphomas have unique genetic characteristics different from sporadic lymphomas and to attempt to identify a gene that confers an increased risk of lymphoma.
Detailed description
- Patients who participate will be asked to complete detailed family and medical history questionnaires initially, with a follow-up questionnaire every year.
- Patients will be asked to supply a blood sample and possibly a mouthwash sample, both of which can be done by mail.
- Patients will be asked to consent to the release of their lymphoma tissue block for the purposes of the study.
- Patients will be given letters of invitation for their affected relatives to invite them to participate.
Study design
- Observational model
- Family based
- Time perspective
- Prospective
- Number of arms
- 3
| Arm | Type | Receives |
|---|---|---|
| Next of Kin of deceased subj by lymphoma | – | –Next of Kin of deceased subject by lymphoma |
| Subject unaffected by lymphoma | – | –Subject unaffected by lymphoma |
| Subject affected by lymphoma | – | –Subject affected by lymphoma |
Who may qualify
- Ages
- 18 years and older
- Sex
- All
- Healthy volunteers
- Not accepted
- Age groups
- Adult, Older adult
- Study population
- Group 1: Next of kin of a relative who has died from lymphoma Group 2: Subjects who have a next of kin diagnosed with lymphoma and/or CLL Group 3: Subjects who have had or have non-Hodgkin's lymphoma, CLL or Hodgkin's disease and had a relative who also had lymphoma or CLL
Key inclusion criteria (4 listed)
- Any individual diagnosed with non-Hodgkin's lymphoma or Hodgkin's disease or chronic lymphocytic leukemia (CLL), who has a 1st degree relative (parent, sibling or child) with a lymphoproliferative disorder; or families in which the individual has a lymphoproliferative disorder, and an unusual clustering of frequent or premature solid tumors is also observed.
- Family members of the individual, either affected or unaffected with lymphoma, who are contacted by the individual and agree to participate in the study.
- Deceased family members may be included in the study. Public records such as death certificates may be used to confirm the history. Consent for medical records or tissue blocks will be obtained from the deceased family member's next of kin. The hierarchy of relatives defined as next of kin is spouse, offspring, parents and siblings. Archived tissue samples may be used for genetic research.
- Age > 18 years
Key exclusion criteria (1 listed)
- Subjects without a family history of lymphoma
Eligibility is decided by the study team after screening; this overview does not establish that a patient qualifies. Full inclusion and exclusion criteria.
Primary outcome
Genetic factors that contribute to the development of lymphomas and CLL
Time frame: Indefinite
Genetic factors that contribute to the development of lymphomas and CLL
Results and safety
This study is still under way. Results are not available in the source record yet.
Research links
- Official record on ClinicalTrials.govLast updated by the sponsor 13 Oct 2026.
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Referral and contact
AzTrials does not enrol participants or take referrals. Contact the study team or a site listed below; they decide who can take part.
Jennifer R. Brown, MD, PhD principal investigator
Dana-Farber Cancer Institute
1 site in 1 country: see every site and its status.
Questions about this trial
What is this clinical trial studying?
An observational study of Non-Hodgkin's Lymphoma and Hodgkin's Disease, run by Dana-Farber Cancer Institute at 1 site in United States.
The full registered description is in the About this study section and the official record.
Who may be eligible to take part?
The sponsor lists 4 inclusion and 1 exclusion criteria. Eligibility is decided by the study team after screening, so read the full criteria and contact a listed site.
Is this clinical trial currently recruiting?
The record says: looking for participants now, as of the sponsor's last update on 13 Oct 2026. Status can change between updates, so confirm with the study contact before making plans.
Where is the study taking place?
The record lists 1 site in United States. Whether a site is taking part right now should be confirmed with that site. See every site.
What are the possible benefits and risks?
They depend on the study and the treatment, and no study can promise a benefit. The study team explains the known risks during informed consent, before anyone joins; the record itself does not list them.
Are results available for this study?
This study is still under way. Results are not available in the source record yet.
How can a doctor refer a patient or contact the research team?
Contact Celeste Carey, MS (857-215-1646, celeste_carey@dfci.harvard.edu), or a site near the patient. AzTrials does not enrol participants or take referrals.
What does the primary outcome measure?
Genetic factors that contribute to the development of lymphomas and CLL (time frame: Indefinite). It is what the study was designed to measure, not a finding.
Where can I read the original study information?
Does a listing mean the treatment is approved or proven to work?
No. A listing means the study is registered. It does not show that the treatment is safe, works, or is approved by a regulator.
How often is this information updated?
AzTrials copies changed records from ClinicalTrials.gov every night and reloads the whole registry every week. The sponsor last updated this record on 13 Oct 2026; AzTrials last refreshed its copy on 26 Oct 2026.