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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.
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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| Name | Type | Description | Arm Group Labels | Other Names |
|---|---|---|---|---|
| any/all treatments for blood cancer | Other | Following people undergoing any/all treatments for blood cancer. |
| Measure | Description | Time Frame |
|---|---|---|
| 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 |
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Inclusion Criteria:
People with blood cancer, before, during, and after blood cancer treatments.
Exclusion Criteria:
People unable or unwilling to sign informed consent.
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People with blood cancer, before, during, and after blood cancer treatments.
| Name | Role | Phone | Extension | |
|---|---|---|---|---|
| Larry Saltzman, MD | Contact | 844-696-7228 | larry.saltzman@lls.org | |
| Brian J Chadwick, BS RN | Contact | 9144145788 | chadwickbj@gmail.com |
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| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Lymphoma and Leukemia Society | Recruiting | Rye Brook | New York | 10573 | United States |
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.
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.
De-identified data will be made available to LLS investigators and investigators approved by LLS.
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| ID | Term |
|---|---|
| D019337 | Hematologic Neoplasms |
| ID | Term |
|---|---|
| D009371 | Neoplasms by Site |
| D009369 | Neoplasms |
| D006402 | Hematologic Diseases |
| D006425 | Hemic and Lymphatic Diseases |
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