Registry FAQ
What is the CARRA Registry?
- The CARRA Registry is a collection of information about how childhood-onset rheumatic diseases are treated and how they affect patients. The information is provided by the medical team and by patients and their families. Patients’ names and other identifying information are kept separate from all of the other information.
- Being in the Registry will not change anything about patients’ treatment or care from their doctors. There may be research studies being performed within the Registry, but patients and their families are always told about these before they are asked to participate in them.
- Researchers can use the information collected to answer important questions about how safe medications are, how well medications work, and how well patients do over time.
- Combining the Registry information with biosamples, such as blood tests or genetic tests, can be a very powerful tool for researchers. For example, they may be able to predict how well patients will do with a particular medication or even find a cure for the disease.
Conditions Currently Included in the CARRA Registry
- Juvenile Idiopathic Arthritis (began July 2015)
- Systemic Lupus Erythematosus (began March 2017)
- Juvenile Dermatomyositis (began February 2018)
Conditions Coming Soon to the CARRA Registry
- Systemic Sclerosis and Localized Scleroderma
Conditions Under Development for Inclusion in the CARRA Registry
- Autoinflammatory Syndromes (including Periodic Fever Syndromes and Chronic Non-Bacterial Osteomyelitis)
What information will the CARRA Registry collect?
The registry will collect information about you/your child’s illness including:
- Medications used
- Blood tests results
- Information your doctor enters about how you are doing
- Information you enter about how you are doing
- Any side effects or illnesses you may have
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.
