The Leukemia and Lymphoma Society (LLS) National Research Registry

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.

Study Overview

• Status: Recruiting
• Conditions: Blood Cancer
• Intervention / Treatment: Other: any/all treatments for blood cancer

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.

• Study Type: Observational
• Enrollment (Anticipated): 1000

Contacts and Locations

• Study Contact: Name: Larry Saltzman, MD; Phone Number: 844-696-7228; Email: larry.saltzman@lls.org
• Study Contact Backup: Name: Brian J Chadwick, BS RN; Phone Number: 9144145788; Email: chadwickbj@gmail.com

Study Locations

• United States
  • New York
    • Rye Brook, New York, United States, 10573
      • Recruiting
      • Lymphoma and Leukemia Society
      • Contact: Larry Saltzman, MD; Phone Number: 844-696-7228; Email: larry.saltzman@lls.org
      • Contact: Brian J Chadwick, BS RN; Phone Number: 9144145788; Email: chadwickbj@gmail.com

Participation Criteria

Eligibility Criteria

• Ages Eligible for Study: 21 years and older (Adult, Older Adult)
• Accepts Healthy Volunteers: No
• Genders Eligible for Study: All

• Sampling Method: Non-Probability Sample

Study Population

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

Description

Inclusion Criteria:

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

Exclusion Criteria:

People unable or unwilling to sign informed consent.

Study Plan

How is the study designed?

What is the study measuring?

Primary Outcome Measures

Outcome Measure	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

Collaborators and Investigators

• Sponsor: Lymphoma and Leukemia Society

Study record dates

Study Major Dates

• Study Start (Actual): July 24, 2017
• Primary Completion (Anticipated): July 23, 2027
• Study Completion (Anticipated): July 23, 2027

Study Registration Dates

• First Submitted: March 16, 2021
• First Submitted That Met QC Criteria: March 16, 2021
• First Posted (Actual): March 19, 2021

Study Record Updates

• Last Update Posted (Actual): April 7, 2022
• Last Update Submitted That Met QC Criteria: April 5, 2022
• Last Verified: April 1, 2022

More Information

Terms related to this study

• Additional Relevant MeSH Terms: Neoplasms; Neoplasms by Site; Hematologic Diseases; Hematologic Neoplasms
• Other Study ID Numbers: LLSNRR-17-001

Plan for Individual participant data (IPD)

• Plan to Share Individual Participant Data (IPD)?: YES
• IPD Plan Description: 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.
• IPD Sharing 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.
• IPD Sharing Access Criteria: De-identified data will be made available to LLS investigators and investigators approved by LLS.
• IPD Sharing Supporting Information Type: STUDY_PROTOCOL

Drug and device information, study documents

• Studies a U.S. FDA-regulated drug product: No
• Studies a U.S. FDA-regulated device product: No