Research Co-Design Team (Kawasaki Disease) Member Bios

pSCANNER Kawasaki Disease Research Co-Design Team

Funded Study: A Stakeholder-Driven Comparative Effectiveness Study of Treatments to Prevent Coronary Artery Damage in Patients with Resistant Kawasaki Disease

 

Principal Investigator:

Jane Burns, UCSD School of Medicine:  Dr. Burns is Director of the Kawasaki Disease Research Center at UCSD/Rady Children’s Hospital where she leads a multidisciplinary team that cares for 80-90 new KD patients each year and follows over 1,200 families in the KD Clinic. With a team from UCSD, Dr. Burns has launched The Adult KD Collaborative, a long-range epidemiologic and clinical study of cardiovascular biomarkers and functional studies in adults who suffered from KD in childhood.  Dr. Burns is the pSCANNER representative for the PCORnet Rare Disease Task Force and the Principal Investigator on the PCORI funded study: A Stakeholder-Driven Comparative Effectiveness Study of Treatments to Prevent Coronary Artery Damage in Patients with Resistant Kawasaki Disease.

 

Co-Investigators:

Anna Lillian, Patient/Parent Representative: Ms. Lillian is active as a parent and patient advocate for Kawasaki disease.  She has been involved in several research studies and the KD Foundation for over 10 years.  Ms. Lillian served on the Phase I pSCANNER Stakeholder Advisory Board (SAB)-Education (KD) was a member of the pSCANNER research co-design team for KD and serves as patient/parent co-investigator on the study.

Katie Rauschl, Patient Representative: Ms. Rauschl was diagnosed with KD at age nine in 1996 and is now working as a registered nurse on a cardiac unit at Sharp Memorial Hospital. She has a sincere interest in research that will identify effective treatment. Ms. Rauschl served on the Phase I pSCANNER SAB-Education (KD) and as a member of the pSCANNER research co-design team for KD. She now serves as a patient co-investigator on the study.

 

Advisory Board Members:

Kate Davila, Patient Representative: Ms. Davila is a Kawasaki disease survivor, diagnosed at the age of 15, and continues to be active as a board member with the Kawasaki Disease Foundation and as a KD Bridges volunteer talking to newly diagnosed patients and their parents.  Ms. Davila was a member of the pSCANNER research co-design team for  KD.  She served on the pSCANNER Phase I SAB-Education (KD) and serves on the pSCANNER Stakeholder Advisory Board for Phase II.

Catherine Frank, Patient/Parent Representative, Patient Advocate:  Ms. Frank is a board member and vice-president of the Kawasaki Disease Foundation, a non-profit organization dedicated to Kawasaki disease issues. The board of directors consists primarily of parents whose children have had Kawasaki disease. She was a member of the pSCANNER research co-design team for KD. Ms. Frank served on the pSCANNER Phase I Education (KD) and Governance SAB and continues to serve on the SAB in Phase II.

Vanessa Gutierrez, Patient/Parent Representative: Ms. Gutierrez is a board member of the Kawasaki Disease Foundation and the parent of a child diagnosed with KD.  She participated on the SAB-Education (KD) and the research prioritization panel in Phase I of pSCANNER.

Cara Rauschl, Patient/Parent Representative: Ms. Rauschl participated in Phase 1 of the pSCANNER project as a representative on the SAB-Education (KD).  As a nurse she understands the process of a hospitalization; as a parent of a child diagnosed with KD she brings a unique perspective from both sides. Ms. Rauschl was a member of the pSCANNER research co-design team for KD. She continues to serve on the pSCANNER SAB-Governance for Phase II of the project.

Adriana Tremoulet, Clinician: Dr. Adriana Tremoulet is the associate director of the Kawasaki Disease Research Center at UC San Diego. In this role, she cares for nearly 1,500 children with Kawasaki disease in San Diego County and an additional 90 children a year hospitalized at Rady Children's Hospital-San Diego . In 2013, Dr. Tremoulet was appointed as the associate director of clinical research at Rady Children's. She is also the site principal investigator for the National Institute of Child Health and Human Development-funded Pediatric Trials Network and Research Program in Developmental Pharmacology at UC San Diego. Dr. Tremoulet has led Phase I through III clinical trials, including a Food and Drug Administration Orphan Products grant-funded Phase III clinical trial on the use of infliximab as adjunctive primary therapy in Kawasaki disease.

 

pSCANNER Team

Jane Burns, Clinician: Principal Investigator on the PCORI funded study: A Stakeholder-Driven Comparative Effectiveness Study of Treatments to Prevent Coronary Artery Damage in Patients with Resistant Kawasaki Disease.

Katherine Kim, Engagement Principal Investigator:  Dr. Kim is an Assistant Professor at UC Davis, Betty Irene Moore School of Nursing. Her research centers on the role of technology in consumer and patient engagement in health and technology-enabled care models with a particular focus in mobile Health (mHealth) and social networks, distributed research networks (DRNs) and health information exchange (HIE).

Kate Marie, UC Davis Project Manager:  Ms. Marie is the Research Manager for the UC Davis Center for Health and Technology providing management and oversight for technology-enabled health programs.