What is the CARRA Registry?
Conditions Currently Included in the CARRA Registry
Conditions Coming Soon to the CARRA Registry
Conditions Under Development for Inclusion in the CARRA Registry
What information will the CARRA Registry collect?
The registry will collect information about you/your child’s illness including:
Most of this identity protected information is already collected during your normal visit. But by being a part of the registry, the information can be shared with other doctors, researchers and families to learn more about these illnesses. The information can eventually be used to understand which treatments will work best for each disease, and even for each individual person. We will also learn more about the long and short term safety of all medications, because each child will be followed for a long time.
Will I receive the same care from my doctor?
The care you receive from your doctor will be the same, whether you agree to join the registry or not.
What is the risk of joining the CARRA Registry?
CARRA uses the most up to date security to protect and keep your identity and health information separated. However, there is always a chance that your identity could be linked to your data in the event of a security breach.
Can I quit the registry?
You can quit the registry at any time, and your information will stop being collected.
What do I have to do to join?
To join the registry you have to sign a document to agree to share your identity protected data, and to answer a few additional questions during your clinic visits.