The Leukemia and Lymphoma Society (LLS) National Research Registry

Lymphoma and Leukemia Society

Status: Enrolling

Conditions: Blood Cancer

Treatments: Other: any/all treatments for blood cancer

Study type: Observational

Funder types: Other

Identifiers

NCT04806295

LLSNRR-17-001

Details and patient eligibility

About

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.

Full 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:

1. 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.
2. 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.
3. 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.
4. Obtain permission from LLS National Research Registry research subjects to be contacted from time to time, for them to provide updated medical information.

Enrollment: 1,000 estimated patients

Sex: All

Ages: 21+ years old

Volunteers: No Healthy Volunteers

Inclusion criteria

People with blood cancer, before, during, and after blood cancer treatments.

Exclusion criteria

People unable or unwilling to sign informed consent.