What is the RESONANCE Patient Registry?
RESONANCE is a voluntary, patient-powered registry, involving a network of physicians and researchers dedicated to advancing research efforts in recurrent pericarditis. The registry will collect data on your diagnosis, recurrences, symptoms, treatment, and impact on your daily life. The registry is an observational research study, meaning that physicians managing, and participants living with, recurrent pericarditis will report data over time to understand how the disease and severity of symptoms may change.
How do I participate in the registry?
- Complete Questionnaire: Complete the online registry questionnaire to begin the process. Start Questionnaire Here.
- Complete Telephone Interview: Following completion of the online questionnaire, a trained Healthcare Professional from TKL Research will contact you with further questions about your diagnosis and eligibility for the registry.
- Sign Consent Form: Following a review of your medical files, you will be asked to sign a consent form to enroll into the registry. There may be additional information required, such as signing a medical release form.
You can participate in the registry from anywhere in the United States. The RESONANCE registry does not require you to go to a physical location or attend any additional appointments with your healthcare provider. If you do not live near a registry site, you can still participate through our decentralized site, TKL Research. If you would like more information, please contact us at RESONANCE@kiniksa.com.
Frequently Asked Questions
Who can enroll in the registry?
Anyone who lives in the United States who has been diagnosed with recurrent pericarditis can contribute important information and is encouraged to participate. For minors under the age of 18 or those needing assistance, parents, legal guardians, or caregivers may submit information on their behalf. You can also ask your doctor if the healthcare facility where you are receiving your care is participating in the registry. If not, email Kiniksa at Resonance@kiniksa.com for more information.
What’s the difference between a registry and a clinical trial?
A registry is “observational” in nature, which means it collects data on a voluntary basis in the regular course of a doctor’s or patient’s actual experience. Your enrollment in the registry does not set any particular obligation to participate, schedule, or undergo treatment or specific medical tests.
What am I expected to do in the registry?
There are two ways that we gather information for the registry. We will gather information about your treatment through access to your medical records, which are reviewed by a registry healthcare professional. You will also complete surveys in the Registry App on a regular basis to help us understand how the condition is affecting you over time. There is no cost to enroll in the registry.
What is involved in the surveys?
Once logged into the Registry App, the surveys will ask you about your recurrent pericarditis episodes, the pain, your other symptoms, your ability to work/go to school, and your mental health. The surveys will take about 30 minutes to complete and you will receive a notification to complete them every 3 months.
Are the surveys available in different languages?
Currently we are offering the surveys in English or Spanish. You will be able to select your language in the Registry App.
Will my information be kept private/secure?
Yes, we take your privacy and security seriously. The information provided is kept strictly confidential. Any surveys that you complete will never be associated with your name. An anonymous ID number will be assigned instead of using your name. All records related to registry data will be kept in a secure area, and access to this information will be restricted to registry personnel only. All electronic information will be stored in the secure registry database.
How long will you collect data for?
The registry will collect data for a minimum of 5 years. This is to understand more about recurrent pericarditis, including how medications affect the condition over time and how treatment practices affect recurrent episodes. You can decide to leave the registry at any time; you are not committing to stay in the registry for any duration.
Where can I find out more information about the RESONANCE patient registry?
If you have additional questions, please email us at Resonance@kiniksa.com.