Attitudes of Dilated Cardiomyopathy Patients and Investigators Toward Genomic Study Enrollment, Consent Process, and Return of Genetic Results
| Autor: | Alisa D. Blazek, Hanyu Ni, Elizabeth Jordan, Daniel D. Kinnamon, Ray E. Hershberger |
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| Jazyk: | angličtina |
| Rok vydání: | 2020 |
| Předmět: |
Research design
Adult Cardiomyopathy Dilated Male medicine.medical_specialty Adolescent Attitude of Health Personnel MEDLINE Pilot Projects General Biochemistry Genetics and Molecular Biology Article Opt-out Young Adult Surveys and Questionnaires medicine Humans Genetic Testing General Pharmacology Toxicology and Pharmaceutics Precision Medicine Aged Informed Consent business.industry lcsh:Public aspects of medicine General Neuroscience Research lcsh:RM1-950 lcsh:RA1-1270 Dilated cardiomyopathy General Medicine Articles Middle Aged Precision medicine medicine.disease Research Personnel Clinical Practice lcsh:Therapeutics. Pharmacology Family medicine General partnership Female Patient Participation business |
| Zdroj: | Clinical and Translational Science Clinical and Translational Science, Vol 14, Iss 2, Pp 550-557 (2021) |
| ISSN: | 1752-8062 1752-8054 |
| Popis: | Precision medicine genetics study design requires large, diverse cohorts and thoughtful use of electronic technologies. Involving patients in research design may increase enrollment and engagement, thereby enabling a means to relevant patient outcomes in clinical practice. Few data, however, illustrate attitudes of patients with dilated cardiomyopathy (DCM) and their family members toward genetic study design. This study assessed attitudes of 16 enrolled patients and their family members (P/FM), and 18 investigators or researchers (I/R) of the ongoing DCM Precision Medicine Study during a conjoint patient and investigator meeting using structured, self‐administered surveys examining direct‐to‐participant enrollment and web‐based consent, return of genetic results, and other aspects of genetic study design. Survey respondents were half women and largely identified as white. Web‐based consent was supported by 93% of P/FM and 88% of I/R. Most respondents believed that return of genetic results would motivate study enrollment, but also indicated a desire to opt out. Ideal study design preferences included a 1‐hour visit per year, along with the ability to complete study aspects by telephone or web and possibility of prophylactic medication. This study supports partnership of patients and clinical researchers to inform research priorities and study design to attain the promise of precision medicine for DCM. |
| Databáze: | OpenAIRE |
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