Because the purpose of this registry is to look at patterns of DNA results from a large collection of participants, volunteers will not receive any information about individual genetic risks.
No; as this registry is voluntary, there will be no compensation for participants.
Researchers from the GeneRosity Registry and their Intermountain IT professionals will have access to the data from this project. Other collaborators within and outside Intermountain Healthcare will have restricted access to the data, based on your responses to questions, and only after approval by the Intermountain Institutional Review Board.
Contact information is necessary to contact participants for future voluntary research studies. For Intermountain patients involved in the GeneRosity Registry, this information will be used to facilitate linkage to their medical records.
For Intermountain patients, any medical information from clinical visits, inpatient stays, test results, and more may be used in this registry. These may include, but are not limited to, diagnoses, medical test results, outcomes of medical procedures, and responses to medication.
The study researchers will be comparing genetic data for those with various disease and treatment patterns. For example:
Here are three links that show the process for genetic data uploading:
And here are step-by-step instructions for AncestryDNA and 23andMe.
Here are step-by-step instructions for how to use the Our Family Health tool for entering family health data and uploading this into the GeneRosity Registry.
Here is a step-by-step instruction sheet for the GeneRosity Registry main study questionnaire.
If you have multiple DNA results from different companies, please upload them all. Any possible information is useful.
No, only individuals that are 18 years or older can participate in this registry at this time.
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