... efforts to integrate sequencing into care and inform the development of public education and outreach strategies. Methods: A 48-item online survey was advertised on Facebook in Eastern Canada and hosted on SurveyMonkey in late 2018. The survey measured public interest in whole genome sequencing...

...Elshaddai Ephrem; Erica Gleason; Kelly Maurer; Kathleen E. Sullivan Aims: This study was undertaken to examine how a layperson is likely to interpret genetic information delivered in a clinical setting. Methods: A novel survey was designed to engage the reader in a simulated discussion...

... research entails and concerns about participation may constitute recruitment challenges. Objectives: This study seeks to understand how well older adults understand AD genetic research and whether their understanding is related to concerns about participation or willingness to engage. Methods: Our surveys...

... Registries 2011-2014 (EPIRARE) survey. Methods: An indicator of quality was defined by choosing a small set of quality-related variables derived from the survey. The random forest method was used to identify the variables best defining a quality profile for RDRs. Fisher's exact test was employed to assess...

... to receive. Methods: A mail survey was sent to 6,874 families seen at Boston Children's Hospital. The survey included questions assessing the respondents' preferences regarding the types of result they wanted to receive on themselves and their children. Results: Most of the 1,060 respondents ‘probably...

... to persons or property resulting from any ideas, methods, instructions or products referred to in the content or advertisements. Communication Ethics Governance Needs Networking Quality Rare diseases Registries Survey Sustainability A recent report [ 1 ] lists about 600 rare disease...

.... However, there have been no studies that document the range and frequency of these concerns among researchers conducting human genetic/genomic studies. Methods: An online anonymous survey was used to collect information from human genetic researchers regarding views about IRB review of genetic protocols...

... knowledge on the extent of biobanking in Europe, the Institute for Prospective Technological Studies (IPTS) of the European Commission’s Joint Research Centre, in collaboration with the European Science and Technology Observatory (ESTO), conducted a survey among European biobanks. In total, 126 biobanks...

...K.D. Christensen; T.E. Jayaratne; J.S. Roberts; S.L.R. Kardia; E.M. Petty Aim: This study examined understandings of basic genetic concepts among Americans. Method: In a national telephone survey of 1,200 Americans with equal representation among Black and White men and women, subjects responded...