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13. Unlocking Diversity in Cardiovascular Clinical Research: Lessons from the Screening for Cardiac Amyloidosis With Nuclear Imaging in a Minority Populations Study.

Author

Wardhere, Abdirahman, Bampatsias, Dimitrios, Cohn, Elizabeth, Fine, Denise, Freitas, Cinthia de, Gallegos, Cesia, Helmke, Stephen, Ionescu, Natalia, Ivrose, Janvier, Rodriguez, Carlos, Sabogal, Natalia, Fils, Sergylensky, Henry, Terrence, Teruya, Sergio, Ullah, Ikram, Kurian, Damian, Raiszadeh, Farbod, Miller, Edward J., Ruberg, Frederick L., and Maurer, Mathew S.

Abstract

The Screening for Cardiac Amyloidosis with Nuclear Imaging in Minority Populations study seeks to determine the prevalence of transthyretin cardiac amyloidosis (ATTR-CA) among older Black or Caribbean Hispanic individuals with heart failure and an increased wall thickness. We noticed varied recruitment percentages across the recruiting sites and sought to determine the factors associated with greater percentage enrollment of eligible participants. The percentage of enrolled to eligible participants was calculated across study sites. Baseline demographic and clinical characteristics, health literacy, trust in providers, perceived discrimination, area deprivation index (ADI) and English proficiency were compared by site using Kruskal-Wallis's test or one-way ANOVA for continuous variables and the Chi-Square test or Fisher's exact test for categorical variables. Wilcoxon rank sum and Chi-Square tests, with multiple comparisons correction using the false discovery rate (FDR) method, were used as post-hoc analysis when results were statistically significant. Among the four recruiting sites, Boston Medical Center, Columbia University Irving Medical Center, Harlem Hospital and Yale University, which employed different recruitment approaches, the percentage of participants enrolled among eligible participants differed, with the highest rate at Harlem Hospital (n=149 of 310, 48%), followed by Yale University (n=27 of 67, 40%), Boston University (n=247 of 655, 38%), and Columbia University (n=137of 442, 32%), p <0.01. Direct recruitment by the primary cardiovascular care team providing clinical care was associated with higher percent enrolled across sites as were higher education levels and English proficiency. Enrollment differences across sites were not associated with the number of chronic diseases, physician trust, perceived discrimination, or health literacy. Recruitment of eligible under-represented minorities (URMs) in SCAN-MP was associated with approaches employed in recruitment, including direct initial contact by the primary cardiovascular care team providing the potential participant's clinical care. Such data may help improve approaches to more successful recruitment of URMs in clinical research. [ABSTRACT FROM AUTHOR]

Published
2024
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17. Quantitative Uptake of 124I-Evuzamitide on PET Correlates with Markers of Transthyretin Cardiac Amyloidosis, Quality of Life, and Functional Status

Author

SMILEY, DIA, primary, Einstein, Andrew, primary, Mateo, Kimberly, primary, Santana, Denisse, primary, Goldner, Kimberly, primary, Nalbandian, Ani, primary, Mintz, Akiva, primary, Teruya, Sergio, primary, Helmke, Stephen, primary, Rodriguez, Carlos, primary, Jimenez, Massiel, primary, Paulino, Mary, primary, Mirabal, Alfonsina, primary, Chan, Nicholas, primary, Wardhere, Abdirahman, primary, Bampatsias, Dimitrios, primary, Guadalupe, Samantha, primary, De, Jeffeny, primary, Cuomo, Margaret, primary, and Maurer, Mathew, primary

Published
2024
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19. Unlocking Diversity in Cardiovascular Clinical Research: Lessons from the SCAN-MP (Screening for Cardiac Amyloidosis with Nuclear Imaging in Minority Populations) Study

Author

Wardhere, Abdirahaman, primary, Bampatsias, Dimitrios, additional, Cohn, Elizabeth, additional, Fine, Denise, additional, de Freitas, Cinthia, additional, Gallegos, Cesia, additional, Helmke, Stephen, additional, Ionescu, Natalia, additional, Ivrose, Janvier, additional, Rodriguez, Carlos, additional, Sabogal, Natalia, additional, Fils, Sergylensky, additional, Henry, Terrence, additional, Teruya, Sergio, additional, Ullah, Ikram, additional, Kurian, Damian, additional, Raiszadeh, Farbod, additional, Miller, Edward J, additional, Ruberg, Frederick L., additional, and Maurer, Mathew S., additional

Published
2024
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26. Heterogeneous worldwide access and pricing of Tafamidis

Author

Wardhere, Abdirahman, primary, Bampatsias, Dimitrios, additional, Fine, Nowell, additional, Garcia-Pavia, Pablo, additional, Grogan, Martha, additional, Kristen, Arnt V., additional, Damy, Thibaud, additional, Sekijima, Yoshiki, additional, and Maurer, Mathew S., additional

Published
2023
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39. Heterogeneous worldwide access and pricing of Tafamidis.

Author

Wardhere, Abdirahman, Bampatsias, Dimitrios, Fine, Nowell, Garcia-Pavia, Pablo, Grogan, Martha, Kristen, Arnt V., Damy, Thibaud, Sekijima, Yoshiki, and Maurer, Mathew S.

Subjects
*PRICES, *DRUG accessibility, *CARDIAC amyloidosis, *DRUGS, *VALUE (Economics)
Abstract

The article discusses the availability and pricing of Tafamidis, the only approved therapy for ATTR cardiac amyloidosis (ATTR-CA). ATTR-CA is a potentially fatal disease caused by the deposition of transthyretin (TTR) fibrils in the myocardium. Tafamidis has been approved in several countries, including the United States, Europe, Japan, and Canada, but more than thirty percent of the worldwide population still lacks access to the drug, particularly in Africa. The price of Tafamidis varies globally, with the United States having the highest yearly cost. Factors such as healthcare system funding, prevalence of the condition, and availability of alternative treatments can impact drug prices and access. The article concludes by emphasizing the need for efforts to ensure equitable and early access to amyloidosis therapy worldwide. [Extracted from the article]

Published
2024
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