A5089942625- Autism Spectrum Disorder Research
- Parkinson's Disease Mechanisms and Treatments
- Impact of Technology on Adolescents
- BRCA gene mutations in cancer
- Social Media in Health Education
- Health Systems, Economic Evaluations, Quality of Life
- Family and Disability Support Research
- American Political and Social Dynamics
- Complex Systems and Decision Making
- Vietnamese History and Culture Studies
- Cinema and Media Studies
- Lysosomal Storage Disorders Research
- Child Development and Digital Technology
- Mental Health Research Topics
- Genomics and Rare Diseases
- Focus Groups and Qualitative Methods
- Family Support in Illness
- Knowledge Management and Sharing
Indiana University – Purdue University Indianapolis
2018-2024
Indiana University School of Medicine
2018-2024
University of Indianapolis
2024
Providence College
2024
Indiana University
2018-2023
University School
2018
The PD GENEration (PD GENE) study (NCT04057794) is an interventional clinical trial offering genetic testing with result disclosure and counseling to individuals Parkinson disease (PD). In general, experiences of those providing in a research or setting have not been extensively evaluated. this study, providers' when people were explored the goal improving genetics services.
Abstract Genetic testing for Parkinson's disease (PD) is growing as interventional clinical trials begin to enroll participants with PD who carry pathogenic variants in the LRRK2 or GBA genes. However, impact of receiving genetic test results and satisfaction counseling among populations have not yet been studied. The purpose this study was evaluate (1) psychological (2) counseling. Surveyed ( N = 875) were individuals at risk developing PD, initially recruited Progression Marker Initiative...
Abstract Facebook advertising is a powerful tool for increasing the outreach and recruitment of research participants. We describe our experience as genetic counselors within context an internet‐based study, recruiting subjects Parkinson disease (PD) biomarker study.
Persons with Parkinson's disease (PD) who have received genetic test results are faced the decision of whether, and how, to share that information family. Studies in other specialties shown high rates disclosure motivated by a sense responsibility. Rates of, attitudes surrounding, yet be reported this population.
One of the roles a genetic counselor, when returning test results for Parkinson's disease (PD), is to provide emotional support patient. However, whether or not these needs are being met in counseling setting unknown. In this cross-sectional qualitative study, semi-structured interviews with 15 PD research participants were conducted evaluate their and expectations throughout process. Interview questions assessed participants' background understanding counseling, informational prior session,...
<title>Abstract</title> Population-scale genomics programs may enable increased access to genomic medicine. The Genomic Medicine for Everyone (Geno4ME) program was established across the diverse seven-state Providence Health system research and genome-guided care pathways patients’ lifetimes. Key components included targeted multi-lingual outreach underrepresented groups, a novel electronic informed consent (e-consent) education platform, whole genome sequencing (WGS) with clinical return of...
<h3>Objective:</h3> Assess the prevalence of pathogenic variants among people with Parkinson's disease (PWP) through PD GENEration study's 7-gene genetic testing panel (<i>LRRK2, GBA, SNCA, PRKN, PINK1, PARK7 and VPS35</i>) determine predictors variants. <h3>Background:</h3> While precision medicine trials for have started, widespread access to clinical counseling a large North American cohort has been limited. <h3>Design/Methods:</h3> This multi-center observational study provides...
Abstract This is an account of how one residential school for KEYW ORDS children with emotional and behavioural difficulties has attempted to autistic set up a class those presenting complex needs within the spectrum school. The special been observed over number weeks disorders; boys in that unit are benefiting tremendously their needs; social/emotional development learning. security this small given them courage go out group, together teacher, on visits where they showed high degree...