The Leukemia and Lymphoma Society (LLS) National Research Registry

NCT ID: NCT04806295

Last Updated: 2022-04-07

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

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Recruitment Status

RECRUITING

Total Enrollment

1000 participants

Study Classification

OBSERVATIONAL

Study Start Date

2017-07-24

Study Completion Date

2027-07-23

Brief Summary

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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.

Detailed Description

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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.

Conditions

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Blood Cancer

Study Design

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Observational Model Type

COHORT

Study Time Perspective

RETROSPECTIVE

Interventions

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any/all treatments for blood cancer

Following people undergoing any/all treatments for blood cancer.

Intervention Type OTHER

Eligibility Criteria

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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.
Minimum Eligible Age

21 Years

Eligible Sex

ALL

Accepts Healthy Volunteers

No

Sponsors

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Lymphoma and Leukemia Society

OTHER

Sponsor Role lead

Responsible Party

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Responsibility Role SPONSOR

Locations

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Lymphoma and Leukemia Society

Rye Brook, New York, United States

Site Status RECRUITING

Countries

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United States

Central Contacts

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Larry Saltzman, MD

Role: CONTACT

844-696-7228

Brian J Chadwick, BS RN

Role: CONTACT

9144145788

Facility Contacts

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Larry Saltzman, MD

Role: primary

844-696-7228

Brian J Chadwick, BS RN

Role: backup

9144145788

Other Identifiers

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LLSNRR-17-001

Identifier Type: -

Identifier Source: org_study_id

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