What is a Registry and Why are they important?
A registry is a place to store detailed medical information about people living with or at risk for a disease or other serious health condition.
By collecting health and genetic information from as many people as possible, together we can make a difference. We can:
- Better understand the relationship between genetics and health
- Study why individuals have different symptoms
- Learn about how certain treatments work and don’t work
- Help medical professionals improve how they treat affected individuals with the condition
- Speed up research by collecting information that scientists can use
- Let those living with health conditions (or their family) know when they may be eligible for research studies or clinical trials
Even if you have joined another registry through your doctor or another researcher, it is OK to give your information to other registries like GenomeConnect!
How Can I Participate?
GenomeConnect is open to adults (age 18 and older) and minors under the age of 18 who have the consent of a parent or legal guardian meeting at least one of the following criteria:
- Have already had genetic testing
- Are considering genetic testing
- Are family members of someone who has had genetic testing
Participation includes the following steps:
- Sign up at GenomeConnect.org for your personal portal account
- Fill out your health history to help us capture a snapshot of your overall health. We want to know as much as we can about your health, from your head to your toes!
- Share your genetic testing report so that we can collect important information about the genetic changes that may be listed there
Once your information is in GenomeConnect, we will share it (WITHOUT your name, address, date of birth, or other identifiers) with other researchers and clinicians for the purposes of understanding more about how genes affect human health. As a GenomeConnect member, you will also have the ability to reach out (initially through project staff) to other GenomeConnect members based on a variety of factors, such as diagnosis, gender, location, etc.
What Information is Shared and how is Privacy Protected?
GenomeConnect is very serious about protecting the privacy of participants. PatientCrossroads has tight security measures in place to protect the servers where your information is stored. PatientCrossroads takes your privacy very seriously. Read more about PatientCrossroads security to see why they have been chosen to collect health information for the NIH, non-profit foundations, and Fortune 500 companies.
Who will have access to the data contributed by GenomeConnect participants?
- Any data that gets transferred out of GenomeConnect is deidentified, meaning personal information like name, date of birth, etc. is removed.
- The only people with access to identifiable information about participants such as name, date of birth, etc. are a limited group of registry staff.
What Information WILL be Shared?
By participating in this registry, you will be sharing the following information:
- Your Genetic Test Results
- For example, if you have had a test looking for changes in a particular gene, and you upload that test result, information on that test result will be shared.
- If more than one genetic change was found and reported, these are called “linked variants” and may be shared together (“linked”) in some databases.
- Your Health Information
- It is the belief of the GenomeConnect team that individuals are often the best historians at their (or their child’s) health history, often with a more complete history than any one doctor or the electronic health record at one medical institution.
- For example, if you report that you have had a heart defect requiring surgery, you have been diagnosed with autism, and you have diabetes, this information will be shared.
What information WILL NOT be shared?
- Your Personal Identifying Information
- Information such as your name, date of birth, or email address will NEVER be shared with anyone other than registry staff without your permission.