The Leukemia and Lymphoma Society (LLS) National Research Registry
Study Details
Study Description
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.
| Condition or Disease | Intervention/Treatment | Phase |
|---|---|---|
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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:
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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.
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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.
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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.
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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
Outcome Measures
Primary Outcome Measures
- LLS will monitor outcomes of people being treated for blood cancer. [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.
Eligibility Criteria
Criteria
Inclusion Criteria:
People with blood cancer, before, during, and after blood cancer treatments.
Exclusion Criteria:
People unable or unwilling to sign informed consent.
Contacts and Locations
Locations
| Site | City | State | Country | Postal Code | |
|---|---|---|---|---|---|
| 1 | Lymphoma and Leukemia Society | Rye Brook | New York | United States | 10573 |
Sponsors and Collaborators
- Lymphoma and Leukemia Society
Investigators
None specified.Study Documents (Full-Text)
None provided.More Information
Publications
None provided.- LLSNRR-17-001