Ignite Creation Date:
2025-12-24 @ 2:19 PM
Ignite Modification Date:
2025-12-27 @ 4:33 PM
Study NCT ID:
NCT04806295
Status:
RECRUITING
Last Update Posted:
2022-04-07
First Post:
2021-03-16
Is NOT Gene Therapy:
True
Has Adverse Events:
False
Brief Title:
The Leukemia and Lymphoma Society (LLS) National Research Registry
Sponsor:
Lymphoma and Leukemia Society
Organization:
Study Overview
Official Title:
The Leukemia and Lymphoma Society (LLS) National Research Registry
Status:
RECRUITING
Status Verified Date:
2022-04
Last Known Status:
None
Delayed Posting:
No
If Stopped, Why?:
Not Stopped
Has Expanded Access:
False
If Expanded Access, NCT#:
N/A
Has Expanded Access, NCT# Status:
N/A
Acronym:
None
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.
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:
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.
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.
Study Oversight
Has Oversight DMC:
False
Is a FDA Regulated Drug?:
False
Is a FDA Regulated Device?:
False
Is an Unapproved Device?:
None
Is a PPSD?:
None
Is a US Export?:
None
Is an FDA AA801 Violation?: