The Leukemia and Lymphoma Society (LLS) National Research Registry
1 other identifier
observational
1,000
1 country
1
Brief 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.
Trial Health
Trial Health Score
Automated assessment based on enrollment pace, timeline, and geographic reach
participants targeted
Target at P75+ for all trials
Started Jul 2017
Longer than P75 for all trials
1 active site
Health score is calculated from publicly available data and should be used for screening purposes only.
Trial Relationships
Click on a node to explore related trials.
Study Timeline
Key milestones and dates
Study Start
First participant enrolled
July 24, 2017
CompletedFirst Submitted
Initial submission to the registry
March 16, 2021
CompletedFirst Posted
Study publicly available on registry
March 19, 2021
CompletedPrimary Completion
Last participant's last visit for primary outcome
July 23, 2027
ExpectedStudy Completion
Last participant's last visit for all outcomes
July 23, 2027
April 7, 2022
April 1, 2022
10 years
March 16, 2021
April 5, 2022
Conditions
Outcome Measures
Primary Outcomes (1)
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.
10 years
Interventions
Following people undergoing any/all treatments for blood cancer.
Eligibility Criteria
People with blood cancer, before, during, and after blood cancer treatments.
You may qualify if:
- People with blood cancer, before, during, and after blood cancer treatments.
You may not qualify if:
- People unable or unwilling to sign informed consent.
Contact the study team to confirm eligibility.
Sponsors & Collaborators
Study Sites (1)
Lymphoma and Leukemia Society
Rye Brook, New York, 10573, United States
MeSH Terms
Conditions
Condition Hierarchy (Ancestors)
Central Study Contacts
Study Design
- Study Type
- observational
- Observational Model
- COHORT
- Time Perspective
- RETROSPECTIVE
- Sponsor Type
- OTHER
- Responsible Party
- SPONSOR
Study Record Dates
First Submitted
March 16, 2021
First Posted
March 19, 2021
Study Start
July 24, 2017
Primary Completion (Estimated)
July 23, 2027
Study Completion (Estimated)
July 23, 2027
Last Updated
April 7, 2022
Record last verified: 2022-04
Data Sharing
- IPD Sharing
- Will share
- Shared Documents
- STUDY PROTOCOL
- Time Frame
- As data is collected, de-identified and stored in a secure database, it will be provided over time to LLS investigators and investigators approved by LLS.
- Access Criteria
- De-identified data will be made available to LLS investigators and investigators approved by LLS.
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.