Leukemia and Lymphoma Society (LLS) Services Impact on Outcomes and Care

NCT05745285 · University of Miami

Recruiting

In plain English

Click the button to translate this study into plain language — what it is, who qualifies, and what participation looks like.

Official title

The Impact of a Non-Profit Cancer Advocacy Organization on Patient Reported Outcomes and Access to Care: A Multisite, Longitudinal Trial

About this study

The purpose of this study is to learn about the impact that the services and programs provided by Blood Cancer United (formerly, The Leukemia and Lymphoma Society) have among patients with blood cancer, such as access to care, quality of life, and financial burden.

Eligibility criteria

Inclusion Criteria: * Be diagnosed with, or have a recurrence of leukemia, lymphoma, myeloma, myelodysplastic syndromes (MDS), or myeloproliferative neoplasms (MPN). * Have received, be receiving, or be planning to receive primary or relapse treatment for leukemia, lymphoma, myeloma, myelodysplastic syndromes (MDS), or myeloproliferative neoplasms (MPN) and meet at least one of the following criteria: * Be currently receiving treatment which started within the past 18 months OR * Be planning to start treatment within one month OR * Have received Bone Marrow Transplant or CAR-T cell therapy within the past 100 days. * Not be currently participating in any LLS programs or services * Be willing to be followed for 6 months * Speak English or Spanish Exclusion Criteria: * Are not diagnosed with, or have a recurrence of leukemia, lymphoma, myeloma, myelodysplastic syndromes (MDS), or myeloproliferative neoplasms (MPN) * Do not meet at least one of the following criteria if treated or planning to get treated for leukemia, lymphoma, myeloma, myelodysplastic syndromes (MDS), or myeloproliferative neoplasms (MPN): * Be currently receiving treatment which started within the past 18 months OR * Be planning to start treatment within one month OR * Have received Bone Marrow Transplant or CAR-T cell therapy within the past 100 days. * Are currently participating in any LLS programs or services * Are not willing to be followed for 6 months * Do not speak English or Spanish.

Study design

Enrollment target: 400 participants

Allocation: randomized

Masking: none

Age groups: adult, older_adult

Timeline

Starts: 2025-02-04

Estimated completion: 2026-11-01

Last updated: 2026-02-20

Interventions

Other: LLS Program

Primary outcomes

• Change in number of care needs as measured by the Access to Care Survey (Baseline, 3 month, 6 month)
• Change in number of medication access problems as measured by the Access to Care Survey (Baseline, 3 month, 6 month)

Sponsor

University of Miami · other

With: Blood Cancer United

Contacts & investigators

ContactCarlos Melara, MD · contact · cam32407@med.miami.edu · 3052438300

ContactSara Fleszar-Pavlovic, PhD · contact · sarafleszarpavlovic@med.miami.edu

InvestigatorFrank Penedo, PhD · principal_investigator, University of Miami

All locations (3)

Sylvester Comprehensive Cancer CenterRecruiting

Miami, Florida, United States

University of Chicago Comprehensive Cancer CenterNot Yet Recruiting

Chicago, Illinois, United States

Mays Cancer Center at UT Health San AntonioNot Yet Recruiting

San Antonio, Texas, United States

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