Hello! So glad you are here! 😄
This is a project for people who want to create a world-changing biomedical research study or contribute to an existing one. Research studies can vary wildly in how they approach sharing data and results with different groups of people.
The aim of the Sharing Guidebook is to create a resource that shows the different approaches to sharing that research studies have deployed. By looking at how different studies explain their sharing practices in their informed consent documents, the hope is that it will be easier for people improve their own approaches, practices, and preferences -- whether you are a research scientist or a paticipant in a research study.
Here are a few research studies with public informed consent documents
- [mPower] (http://parkinsonmpower.org/)
- [Test My Brain] (https://testmybrain.org/)
- [GoViral] (https://www.goviralstudy.com/)
- [Harvard Personal Genome Project] (http://www.personalgenomes.org/harvard/about)
For each study, we will be
|participant | research team | external scientists | public --- | --- | --- | --- | --- Contact Information | | | | Individual Data | | | | Individual Results | | | | Study Data | | | | Study Results | | | |
| Fields |
|---|
| Yes |
| Maybe |
| No |
| Unclear |
##Textual Analysis of Consent Forms text here
- Collection of biomedical studies and their consent forms
- Textual analysis of each consent form
- Sharing matrix for each study