Use of a Best Practice Alert (BPA) to Increase Diversity Within a US-Based Autism Research Cohort

Duhon, Gabrielle F.; Simon, Andrea R; Limon, Danica L.; Ahmed, Kelli; Marzano, Gabriela; Goin‐Kochel, Robin P.

doi:10.1007/s10803-021-05407-9

Cited by 4 publications

(2 citation statements)

References 8 publications

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“…Sampling approaches are also highly relevant to ensuring that data are representative as a whole, and the Simons Foundation is taking proactive steps to increase diversity within the SPARK sample (Duhon et al, 2022).…”

Section: Sampling and Diagnostic Moderation Effectsmentioning

confidence: 99%

Evaluating causal psychological models: A study of language theories of autism using a large sample

Tang

Levine²,

Adamek³

et al. 2023

Front. Psychol.

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We used a large convenience sample (n = 22,223) from the Simons Powering Autism Research (SPARK) dataset to evaluate causal, explanatory theories of core autism symptoms. In particular, the data-items collected supported the testing of theories that posited altered language abilities as cause of social withdrawal, as well as alternative theories that competed with these language theories. Our results using this large dataset converge with the evolution of the field in the decades since these theories were first proposed, namely supporting primary social withdrawal (in some cases of autism) as a cause of altered language development, rather than vice versa.To accomplish the above empiric goals, we used a highly theory-constrained approach, one which differs from current data-driven modeling trends but is coherent with a very recent resurgence in theory-driven psychology. In addition to careful explication and formalization of theoretical accounts, we propose three principles for future work of this type: specification, quantification, and integration. Specification refers to constraining models with pre-existing data, from both outside and within autism research, with more elaborate models and more veridical measures, and with longitudinal data collection. Quantification refers to using continuous measures of both psychological causes and effects, as well as weighted graphs. This approach avoids “universality and uniqueness” tests that hold that a single cognitive difference could be responsible for a heterogeneous and complex behavioral phenotype. Integration of multiple explanatory paths within a single model helps the field examine for multiple contributors to a single behavioral feature or to multiple behavioral features. It also allows integration of explanatory theories across multiple current-day diagnoses and as well as typical development.

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Section: Sampling and Diagnostic Moderation Effectsmentioning

confidence: 99%

Evaluating causal psychological models: A study of language theories of autism using a large sample

Tang

Levine²,

Adamek³

et al. 2023

Front. Psychol.

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“…In particular, Black/African American individuals commonly cite concerns about racial discrimination and mistrust of healthcare/research staff as barriers to participation in genetic research [6][7][8][9], while Asian families report language barriers and a lack of information/resources available in their native languages [8]. Fortunately, recent studies leveraging tools within the electronic health record (EHR) for research recruitment demonstrate both (a) improved collaboration between healthcare providers and researchers and (b) increased engagement and retention of families of color in clinical research [10][11][12]. Efforts like these are critical for identifying effective recruitment strategies that counteract barriers to research participation and expedite study progress.…”

Section: Introductionmentioning

confidence: 99%

Evidence-based recruitment strategies for clinical research: Study personnel’s and research participants’ perceptions about successful methods of outreach for a U.S. Autism-Research Cohort

Goin-Kochel,

Lozano,

Duhon

et al. 2024

J. Clin. Trans. Sci.

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Introduction: Under enrollment of participants in clinical research is costly and delays study completion to impact public health. Given that research personnel make decisions about which strategies to pursue and participants are the recipients of these efforts, we surveyed research staff (n = 52) and participants (n = 4,144) affiliated with SPARK (Simons Foundation Powering Autism for Knowledge) – the largest study of autism in the U.S. – to understand their perceptions of effective recruitment strategies. Methods: In Study 1, research personnel were asked to report recruitment strategies that they tried for SPARK and to indicate which ones they would and would not repeat/recommend. In Study 2, SPARK participants were asked to indicate all the ways they heard about the study prior to enrollment and which one was most influential in their decisions to enroll. Results: Staff rated speaking with a SPARK-study-team member (36.5%), speaking with a medical provider (19.2%), word of mouth (11.5%), and a live TV news story (11.5%) as the most successful strategies. Participants most often heard about SPARK via social media (47.0%), speaking with a medical provider (23.1%), and an online search (20.1%). Research personnel’s and participants’ views on effective recruitment strategies often differed, with the exception of speaking with a medical provider. Conclusion: Results suggest that a combination of strategies is likely to be most effective in reaching diverse audiences. Findings have implications for the selection of strategies that meet a study’s specific needs, as well as recruitment-strategy “combinations” that may enhance the influence of outreach efforts.

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Utilization of a Best Practice Alert (BPA) at Point-of-Care for Recruitment into a US-Based Autism Research Study

Simon

Ahmed

Limon

et al. 2022

J Autism Dev Disord

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Use of a Best Practice Alert (BPA) to Increase Diversity Within a US-Based Autism Research Cohort

Cited by 4 publications

References 8 publications

Evaluating causal psychological models: A study of language theories of autism using a large sample

Evaluating causal psychological models: A study of language theories of autism using a large sample

Evidence-based recruitment strategies for clinical research: Study personnel’s and research participants’ perceptions about successful methods of outreach for a U.S. Autism-Research Cohort

Utilization of a Best Practice Alert (BPA) at Point-of-Care for Recruitment into a US-Based Autism Research Study

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