2023 ESC Guidelines for the management of cardiomyopathies: Developed by the task force on the management of cardiomyopathies of the European Society of …

E Arbelo, A Protonotarios, JR Gimeno… - European heart …, 2023 - academic.oup.com
• The specific situation of the patient. Unless otherwise provided for by national regulations,
off-label use of medication should be limited to situations where it is in the patient's interest …

[HTML][HTML] Variability in conceptualizations and measurement of genetic literacy

BM Daly, KA Kaphingst - PEC innovation, 2023 - Elsevier
Objective To examine definitions and measures for genetic literacy in the published
literature, and the associations between commonly utilized measures. Methods We …

[HTML][HTML] Big advocacy, little recognition: the hidden work of Black patients in precision medicine

LH Gerido, K Resnicow, EM Stoffel, T Tomlin… - Journal of Community …, 2023 - Springer
As cost-effective next-generation genome sequencing rapidly develops, calls for greater
inclusion of Black people in genomic research, policy, and practice are necessary for …

[HTML][HTML] The Role of Genetics in the Management of Heart Failure Patients

G Palmieri, MF D'Ambrosio, M Correale… - International Journal of …, 2023 - mdpi.com
Over the last decades, the relevance of genetics in cardiovascular diseases has expanded,
especially in the context of cardiomyopathies. Its relevance extends to the management of …

[HTML][HTML] Family communication and results disclosure after germline sequencing: A mixed methods study

C Harrison, N Bartley, C Jacobs, M Best, S Vatter… - Patient education and …, 2023 - Elsevier
Objective Research on family communication of germline genome sequencing (GS) results
(versus of genetic results after targeted genetic testing) is still emerging, yet potentially …

Patient Understanding of Tumor Genomic Testing: A Quality Improvement Effort

L Senter, D Veney, T Surplus, M Haynam… - JCO Oncology …, 2023 - ascopubs.org
PURPOSE: Tumor genomic testing (TGT) has become increasingly adopted as part of
standard cancer care for many cancers. Despite national guidelines around patient …

[HTML][HTML] Predictors of the likelihood that patients with rheumatoid arthritis will communicate information about rheumatoid arthritis risk to relatives: A quantitative …

I Wells, DT Zemedikun, G Simons, RJ Stack… - Patient Education and …, 2023 - Elsevier
First-degree relatives (FDRs) of people with rheumatoid arthritis (RA) are increasingly
recruited to prediction and prevention studies. Access to FDRs is usually via their proband …

Evaluating visual imagery for participant understanding of research concepts in genomics research

E Rothwell, NO Riches, E Johnson… - Journal of Community …, 2023 - Springer
Informed consent is crucial for participant understanding, engagement, and partnering for
research. However, current written informed consents have significant limitations …

[HTML][HTML] A Video Intervention to Improve Patient Understanding of Tumor Genomic Testing in Patients with Cancer

D Veney, L Wei, AE Toland, CJ Presley, H Hampel… - medRxiv, 2023 - ncbi.nlm.nih.gov
Background: Tumor genomic testing (TGT) has become standard-of-care for most patients
with advanced/metastatic cancer. Despite established guidelines, patient education prior to …

Future Forecasting for Research and Practice in Genetic Literacy

KA Kaphingst - Public Health Genomics, 2023 - karger.com
Information generated by genomic discoveries is increasingly accessible in clinical, public
health, and direct-to-consumer contexts, reaching broader segments of the population than …