Blood CancerNCT04806295
The Leukemia and Lymphoma Society (LLS) National Research Registry
An observational study of Blood Cancer, run by Blood Cancer United at 1 site in United States.
Trial summary
The Leukemia and Lymphoma Society (LLS) has built a National Research Registry to evaluate real world experiences and medical outcomes for people with blood cancer, before, during, and after blood cancer treatments. Read more about this study
- Who is it for?
- Ages 21 years and older
- Conditions the study is for
- Blood Cancer
- What is being tested?
- any/all treatments for blood cancer
- How many people
- 1,000 participants
- Where
- 1 siteUnited States
- Study dates
- 24 Jul 2017to 23 Jul 2027
- 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 21 years and older
- All sexes
- No healthy volunteers
- Adult, Older adult
Study population: People with blood cancer, before, during, and after blood cancer treatments.
Who may be able to join
- People with blood cancer, before, during, and after blood cancer treatments.
Who cannot join
- People unable or unwilling to sign informed consent.
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
Lymphoma and Leukemia Society
Rye Brook, New York, 10573
Larry Saltzman, MD, 844-696-7228, larry.saltzman@lls.org
Brian J Chadwick, BS RN, 9144145788, chadwickbj@gmail.com
About this study
The Leukemia and Lymphoma Society (LLS) has built a National Research Registry to evaluate real world experiences and medical outcomes for people with blood cancer, before, during, and after blood cancer treatments.
Read the detailed description
The LLS National Research Registry is a real-world experiences and outcomes research registry; a collection of patient information and medical data, over time, about people who have a particular disease or condition, or who receive a particular treatment.
The LLS National Research Registry Protocol will:
- Answer research questions using data collected from people with blood cancers. Such research involves analyses of subject profile information completed by subjects and medical records data.
- Obtain permission from LLS National Research Registry research subjects to have Ciitizen, a third-party engaged by LLS, act as their proxy to retrieve full medical record data including images at no cost to research subjects. Note: Patient can choose to upload their medical records into their account, directly.
- Obtain permission from LLS National Research Registry research subjects to share summary data with research partners (like academic researchers, advocacy groups, and pharmaceutical companies) that are advancing treatments for blood cancer. "Summary data" represents the important elements of medical record data, coded for research use, with personal identifiers like name, address, and phone number removed.
- Obtain permission from LLS National Research Registry research subjects to be contacted from time to time, for them to provide updated medical information.
- Conditions
- Blood Cancer
- Being tested
- any/all treatments for blood cancer
- Medical subject headings
- Hematologic Neoplasms
What participants receive
What participants receive. In a randomised study each person is assigned to one group by chance.
any/all treatments for blood cancerOther
Following people undergoing any/all treatments for blood cancer.
What is being measured
The primary outcome is the main question the study is designed to answer.
LLS will monitor outcomes of people being treated for blood cancer.
. The LLS National Research Registry will collect data on up to 1000 research subjects, over up to 10 years, storing that data, including protected health information (PHI) and images, in secure databases, and share de-identified summary data with research partners (like academic researchers, advocacy groups, and pharmaceutical companies) that are advancing treatments for blood cancer. Participation in The LLS National Research Registry may not give research subjects any immediate benefit. It is hoped the knowledge gained from data collected in The LLS National Research Registry will benefit people with blood cancers in the future using this information for research purposes, directed at blood cancers and associated comorbidities.
Measured: 10 years
Timeline
From the start of the study to its completion; the mark is today. Estimated dates are the sponsor’s plan.
- First posted19 Mar 2021
- Study start24 Jul 2017
- Primary completion23 Jul 2027 (estimated)
- Study completion23 Jul 2027 (estimated)
Resources
- Official record on ClinicalTrials.govThe registry entry this page is built from, with its full change history.
- Other trials for Blood CancerStudies of the same condition, open and under way.
- 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
- Cohort
- Time perspective
- Retrospective
- Enrolment
- 1,000 participants (estimated)
Sponsor and investigators
- Lead sponsor
- Blood Cancer United
- Sponsor type
- University, hospital or other
- Responsible party
- Sponsor
IDs, dates and publications
- ClinicalTrials.gov ID
- NCT04806295
- Sponsor's protocol ID
- LLSNRR-17-001
- Status last verified
- Apr 2022
- First submitted
- 16 Mar 2021
- Last updated
- 7 Apr 2022
- Results posted
- No
- Data monitoring committee
- No
- FDA-regulated drug
- No
- FDA-regulated device
- No
- Individual data sharing
- Yes: Participating subjects will be asked to provide permission to share de-identified summary data with research partners (like academic researchers, advocacy groups, and pharmaceutical companies) that are advancing treatments for cancer, neurological disorders, and other diseases. "Summary data" represents the important elements of medical record data, coded for research use, with personal identifiers like name, address, and phone number removed.
Study at a glance
From the registry record, last updated by the sponsor on 7 Apr 2022. Recruitment status is as the sponsor reported it: confirm with the study team.
- Official title
- The Leukemia and Lymphoma Society (LLS) National Research Registry
- ClinicalTrials.gov ID
- NCT04806295
- Acronym / sponsor ID
- LLSNRR-17-001
- Conditions
- Blood Cancer
- Study type
- Observational
- Recruitment status
- Recruiting
- Enrolment
- 1,000 participants (estimated)
- Lead sponsor
- Blood Cancer UnitedUniversity, hospital or other
- Study start
- 24 Jul 2017 (actual)
- Primary completion
- 23 Jul 2027 (estimated)
- Study completion
- 23 Jul 2027 (estimated)
- First posted
- 19 Mar 2021 (actual)
- 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 Leukemia and Lymphoma Society (LLS) has built a National Research Registry to evaluate real world experiences and medical outcomes for people with blood cancer, before, during, and after blood cancer treatments.
Detailed description
The LLS National Research Registry is a real-world experiences and outcomes research registry; a collection of patient information and medical data, over time, about people who have a particular disease or condition, or who receive a particular treatment.
The LLS National Research Registry Protocol will:
- Answer research questions using data collected from people with blood cancers. Such research involves analyses of subject profile information completed by subjects and medical records data.
- Obtain permission from LLS National Research Registry research subjects to have Ciitizen, a third-party engaged by LLS, act as their proxy to retrieve full medical record data including images at no cost to research subjects. Note: Patient can choose to upload their medical records into their account, directly.
- Obtain permission from LLS National Research Registry research subjects to share summary data with research partners (like academic researchers, advocacy groups, and pharmaceutical companies) that are advancing treatments for blood cancer. "Summary data" represents the important elements of medical record data, coded for research use, with personal identifiers like name, address, and phone number removed.
- Obtain permission from LLS National Research Registry research subjects to be contacted from time to time, for them to provide updated medical information.
Study design
- Observational model
- Cohort
- Time perspective
- Retrospective
Who may qualify
- Ages
- 21 years and older
- Sex
- All
- Healthy volunteers
- Not accepted
- Age groups
- Adult, Older adult
- Study population
- People with blood cancer, before, during, and after blood cancer treatments.
Key inclusion criteria (1 listed)
- People with blood cancer, before, during, and after blood cancer treatments.
Key exclusion criteria (1 listed)
- People unable or unwilling to sign informed consent.
Eligibility is decided by the study team after screening; this overview does not establish that a patient qualifies. Full inclusion and exclusion criteria.
Interventions
| Intervention | Type | Arms |
|---|---|---|
| any/all treatments for blood cancerFollowing people undergoing any/all treatments for blood cancer. | Other | – |
Primary outcome
LLS will monitor outcomes of people being treated for blood cancer.
Time frame: 10 years
. The LLS National Research Registry will collect data on up to 1000 research subjects, over up to 10 years, storing that data, including protected health information (PHI) and images, in secure databases, and share de-identified summary data with research partners (like academic researchers, advocacy groups, and pharmaceutical companies) that are advancing treatments for blood cancer. Participation in The LLS National Research Registry may not give research subjects any immediate benefit. It is hoped the knowledge gained from data collected in The LLS National Research Registry will benefit people with blood cancers in the future using this information for research purposes, directed at blood cancers and associated comorbidities.
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 7 Apr 2022.
- Individual participant dataSharing planned: Yes. Participating subjects will be asked to provide permission to share de-identified summary data with research partners (like academic researchers, advocacy groups, and pharmaceutical companies) that are advancing treatments for cancer, neurological disorders, and other diseases. "Summary data" represents the important elements of medical record data, coded for research use, with personal identifiers like name, address, and phone number removed.
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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.
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 Blood Cancer, run by Blood Cancer United 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 1 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 7 Apr 2022. 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 Larry Saltzman, MD (844-696-7228, larry.saltzman@lls.org), or a site near the patient. AzTrials does not enrol participants or take referrals.
What does the primary outcome measure?
LLS will monitor outcomes of people being treated for blood cancer. (time frame: 10 years). 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 7 Apr 2022.