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.
As recurrent pericarditis is a rare disease, the information available to patients and healthcare providers is limited. To help fill this gap in knowledge, Kiniksa Pharmaceuticals developed the RESONANCE patient registry with input from people living with recurrent pericarditis, patient advocacy group leaders, and experts in the field.
As a participant in the RESONANCE patient registry, you will contribute your personal experiences of living with recurrent pericarditis to help researchers understand the impact it has on your life. Your participation in the registry will help to create a better understanding of the disease and support physicians and researchers to better diagnose, manage, and potentially develop or improve treatments for recurrent pericarditis.
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 us at firstname.lastname@example.org for more information.
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.
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 registered healthcare professional. You will also complete surveys in the Registry App on a regular basis to help us understand how the disease is affecting you over time. There is no cost to enroll in the registry.
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.
Currently we are offering the surveys in English or Spanish. You will be able to select your language in the Registry App.
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.
The registry will collect data for a minimum of 5 years. This is to understand more about recurrent pericarditis, including how medications affect the disease 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.