Recommendations to encourage participation of individuals from diverse backgrounds in psychiatric genetic studies

MacDermod, Casey M.; Pettie, Michaela A.; Carrino, Emily A.; Garcia, Susana Cruz; Padalecki, Sophie; Finch, Jody E; Sanzari, Christina M.; Kennedy, Hannah; Pawar, Pratiksha S; M.M., Mcgough,; Iwashita, Ava; Takgbajouah, Mary; Coan, Danielle; Szakasits, Lindsey; Goode, Rachel W.; Wu, Ya-Ke; Reyes‐Rodríguez, Mae Lynn; Vacuán, Eva María Trujillo Chi; Kennedy, Martin A.; Cleland, Lana; Jordan, Jennifer; Maguire, Sarah; Guintivano, Jerry; Giusti‐Rodríguez, Paola; Baker, Jessica H.; Thornton, Laura M.; Bulik, Cynthia M.

doi:10.1002/ajmg.b.32906

Cited by 11 publications

(11 citation statements)

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“…Although it may be more difficult to recruit participants from ethnic minority groups, it is vitally important that researchers make every effort to do so. This should involve engaging these communities from the outset, rather than only studying them as research participants [ 58 ].…”

Section: Discussionmentioning

confidence: 99%

Eating disorders, disordered eating, and body image research in New Zealand: a scoping review

et al. 2023

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Background The prevention and treatment of eating disorders relies on an extensive body of research that includes various foci and methodologies. This scoping review identified relevant studies of eating disorders, body image, and disordered eating with New Zealand samples; charted the methodologies, sample characteristics, and findings reported; and identified several gaps that should be addressed by further research. Methods Using scoping review methodology, two databases were searched for studies examining eating disorders, disordered eating, or body image with New Zealand samples. Snowball methods were further used to identify additional relevant articles that did not appear in initial searches. Two independent reviewers screened the titles and abstracts of 473 records. Full text assessment of the remaining 251 records resulted in 148 peer-reviewed articles being identified as eligible for the final review. A search of institutional databases yielded 106 Masters and Doctoral theses for assessment, with a total of 47 theses being identified as eligible for the final review. The included studies were classified by methodology, and the extracted information included the study foci, data collected, sample size, demographic information, and key findings. Results The eligible studies examined a variety of eating disorder categories including binge-eating disorder, bulimia nervosa, and anorexia nervosa, in addition to disordered eating behaviours and body image in nonclinical or community samples. Methodologies included treatment trials, secondary analysis of existing datasets, non-treatment experimental interventions, cross-sectional observation, case-control studies, qualitative and mixed-methods studies, and case studies or series. Across all of the studies, questionnaire and interview data were most commonly utilised. A wide range of sample sizes were evident, and studies often reported all-female or mostly-female participants, with minimal inclusion of males and gender minorities. There was also an underrepresentation of minority ethnicities in many studies, highlighting the need for future research to increase diversity within samples. Conclusion This study provides a comprehensive and detailed overview of research into eating disorders and body image in New Zealand, while highlighting important considerations for both local and international research.

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Section: Discussionmentioning

confidence: 99%

Eating disorders, disordered eating, and body image research in New Zealand: a scoping review

et al. 2023

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“…Acknowledging systemic and individual level hurdles in this regard is the first step toward enhanced participation rates at the start of the study and reduced attrition while it is ongoing. Systematic reviews conducted in the past have suggested a few factors that could effectively favor participation in research ( 34 , 95 , 96 , 112 ).…”

Section: Possible Solutions For Conducting Field Based Research In a ...mentioning

confidence: 99%

“…Patients are found to be more likely to participate in research studies if they are convinced that the output will benefit their health. It is essential to be transparent as well as realistic with participants in terms of what they can expect from their involvement ( 34 , 95 , 96 , 112 ). Additionally, efforts should be made to make them understand that research is not the same as medical care and immediate treatment benefit may not be a possibility ( 95 ).…”

Section: Possible Solutions For Conducting Field Based Research In a ...mentioning

confidence: 99%

“…Various approaches to garner greater confidence in the research and its findings have been suggested in literature, including sharing of study data where applicable, dissemination of results among the participants, and keeping them updated about the study progress along with other stakeholders ( 34 , 95 , 96 , 112 ). The language and terminology used for communicating such information plays a crucial role in communication ( 34 , 95 , 96 , 112 ).…”

Section: Possible Solutions For Conducting Field Based Research In a ...mentioning

confidence: 99%

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Field based research in the era of the pandemic in resource limited settings: challenges and lessons for the future

Mulchandani,

Lyngdoh,

Gandotra

et al. 2024

Front. Public Health

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The coronavirus pandemic that began in December 2019, has had an unprecedented impact on the global economy, health systems and infrastructure, in addition to being responsible for significant mortality and morbidity worldwide. The “new normal” has brought along, unforeseen challenges for the scientific community, owing to obstructions in conducting field-based research in lieu of minimizing exposure through in-person contact. This has had greater ramifications for the LMICs, adding to the already existing concerns. As a response to COVID-19 related movement restrictions, public health researchers across countries had to switch to remote data collections methods. However, impediments like lack of awareness and skepticism among participants, dependence on paper-based prescriptions, dearth of digitized patient records, gaps in connectivity, reliance on smart phones, concerns with participant privacy at home and greater loss to follow-up act as hurdles to carrying out a research study virtually, especially in resource-limited settings. Promoting health literacy through science communication, ensuring digitization of health records in hospitals, and employing measures to encourage research participation among the general public are some steps to tackle barriers to remote research in the long term. COVID-19 may not be a health emergency anymore, but we are not immune to future pandemics. A more holistic approach to research by turning obstacles into opportunities will not just ensure a more comprehensive public health response in the coming time, but also bolster the existing infrastructure for a stronger healthcare system for countries.

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“…We will use a multi-pronged recruitment approach including: outreach to ED clinicians and programs across the country, traditional media (press releases and newspaper announcements), and social media and other online platforms (websites, Facebook, Twitter, Instagram, and podcasts). This includes use of social media ads on Facebook and Instagram, which have proven successful for other similar studies (19). We enrolled a group of ARFID-GEN parent stakeholders who have consulted with us on study design prior to nalizing our methods.…”

Section: Participantsmentioning

confidence: 99%

Arfid Genes and Environment (ARFID-GEN): Study Protocol

Bulik,

Micali,

et al. 2023

Preprint

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Background The Avoidant Restrictive Food Intake Disorder Genes and Environment (ARFID-GEN) study is a study of genetic and environmental factors that contribute to risk for developing ARFID in children and adults. Methods A total of 3,000 children and adults with ARFID from the United States will be included. Parents/guardians and their children with ARFID (ages 7 to 17) and adults with ARFID (ages 18+) will complete comprehensive online consent, parent verification of child assent (when applicable), and phenotyping. Enrolled participants with ARFID will submit a saliva sample for genotyping. A genome-wide association study of ARFID will be conducted. Discussion ARFID-GEN, a large-scale genetic study of ARFID, is designed to rapidly advance the study of the genetics of eating disorders. We will explicate the genetic architecture of ARFID relative to other eating disorders and to other psychiatric, neurodevelopmental, and metabolic disorders and traits. Our goal is for ARFID to deliver “actionable” findings that can be transformed into clinically meaningful insights. Trial registration: ARFID-GEN is a registered clinical trial: clinicaltrials.gov NCT05605067

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Recommendations to encourage participation of individuals from diverse backgrounds in psychiatric genetic studies

Cited by 11 publications

References 50 publications

Eating disorders, disordered eating, and body image research in New Zealand: a scoping review

Eating disorders, disordered eating, and body image research in New Zealand: a scoping review

Field based research in the era of the pandemic in resource limited settings: challenges and lessons for the future

Arfid Genes and Environment (ARFID-GEN): Study Protocol

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