The purpose of this research study is to learn more about the normal function of blood vessels in healthy children and adolescents. This will help us discover differences between healthy individuals and children with lupus. Healthy control participants will be asked to make 1 visit to CHOP to complete a brief survey, a fasting blood draw and a test to measure the blood pressure in your fingers.

We are trying to learn more about the ways in which adolescents (12-17 years) are involved in decision making related to their chronic condition. We are hoping to partner with families who are planning to attend or recently attended a visit in the Comprehensive Sickle Cell Center, Diabetes Center for Children, Center for Inflammatory Bowel Disease, or the Division of Rheumatology at CHOP.

If you and your child are able to help us, you will each be asked to complete a questionnaire about your experiences during a recent clinic visit. Additionally, a random selection of parents and teens will be asked to complete an interview with our team. All participants will be compensated for their participation in this study.

It is essential that we speak to families before or immediately following their scheduled visit at CHOP.

This is a clinical trial to study the use of Tadekinig alfa or placebo (medication) in the treatment of NLRC4 MAS mutation or XIAP deficiency. This study involves taking the medication every 48 hours for up to 26 weeks. Participants will also be required to attend up to 14 in-person study visits to review their disease state while they are taking the medication. Compensation for time and travel related to study visits may be provided to qualified participants.