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Rheumatology research report, Vol. 10, issue 3, Fall 2013 Chen, Audrea 2013

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          Hot off the press!      Results from studies in our Division   What matters the most in JIA?        Last year, youth with JIA, parents of children with JIA,               rheumatologists and allied health care professionals participated            in focus groups in Vancouver, Victoria and Ottawa to gather their       opinions about the clinical features that describe the most important attributes of disease course and outcome of juvenile idiopathic arthritis (JIA) for which to develop a helpful prediction tool.   From the focus groups, we determined that medication requirements, medication side-effects, the number of active/swollen joints, pain and quality of life were considered high priority clinical features by most groups, and it was suggested that current definitions of improvement in JIA should include pain and quality of life ? in order to make them more relevant to patients and parents. Additionally, patients and parents preferred simple, understandable and emotionally neutral terms when discussing JIA disease course. As for the design of course prediction tools, participants agreed that tools should be easy to use and employ a more creative format than the most commonly used medical model.  In conclusion, the opinions of parents and patients with JIA differ from those of healthcare providers and should be considered when designing prediction tools and defining outcome measures for both ongoing care and research.   We thank the Canadian Rheumatology Association for funding this project, and patients and parents for contributing their time.  Announcements The Rheumatology team is growing! We would like to introduce you to three new faces that you will be seeing in our clinic. Dr. Vinay Shivamurthy recently joined our team as a new Rheumatology fellow. He will be completing his Pediatric Rheumatology training with us in the coming years.  Audrea Chen, 4th year UBC Physiology student, and Megan Bruschetta, 3rd year SFU Kinesiology student, are two new research assistants who will be assisting the team with various Rheumatology research studies.      Rheumatology  Research Report For Patients & their Families Volume 10, Issue 3 Fall 2013  Editor?s Space Welcome to another issue of our research newsletter! We hope you had a great summer and have settled in to cool weather that Fall brings. The Rheumatology team certainly had a busy  but fun summer with many activities, including the Cassie & Friends Scotiabank Run and the Arthritis summer camp.   In this edition of the newsletter, we will tell you about a new mobile app being developed for uveitis patients and share a video featuring some of our clinic patients.  Thank you to everyone who took the time to complete the patient satisfaction surveys - we received over 600 responses from both patients and parents! We will be sharing the results with you in one of our future newsletters.  Happy reading!      Rheumatology staff at the Cassie & Friends Scotiabank Run, June 2013  Guest Editor: Audrea Chen  (Senior editor: Dr. David Cabral) Division of Pediatric Rheumatology,  BC Children?s Hospital  Tel: (604) 875-2437  Fax: (604) 875-3141              Audrea Megan  The New Kids on the Block: Our Division?s Newest Projects  Testing of a mobile application for patients with Uveitis One of our research co-op students is in the process of creating a mobile app to help children and teens with uveitis manage their own health. Members of the Rheumatology and Opthalmology teams are working together on this app, which aims to educate patients about their condition, provide them a space to record test results, treatment recommendations, and medications. The app will even notify you when to take your medications! Over the next few months, we will be looking for uveitis patients and parents who would be interested in testing the app and providing feedback.  After thorough testing, we hope to be able to provide this app to all patients with uveitis.   Linking Exercise, Activity and Pathophysiology: A study update Like us on Facebook! http://tinyurl.com/LEAPstudyFacebook   There are currently 215 LEAP participants recruited from 12 centers across Canada. Vancouver has 55 participants and we are currently in the lead for recruitment! This December will be the last study visit for one of our participants, with many more completing this two year study in 2014. Preliminary data analysis has already begun!  Watch this!  Juvenile Idiopathic Arthritis: It Can?t Stop Me!  A new video (http://tinyurl.com/LEAPstudyVideo) promoting exercise for kids with JIA and the LEAP study features some of our LEAP subjects and clinic patients.  The video was funded by the CIHR Institute of Musculoskeletal Health and Arthritis.  Check it out - you might see some familiar faces!       Open invitation:  Studies Currently Recruiting Patients  PREVENT-JIA Study Research Question: Can a new blood test that measures a  protein called S100 help to predict if a patient whose arthritis is  under control will have disease flare after medications are stopped? Who is eligible? Children with JIA (excluding oligoarthritis persistent)  who have had inactive disease on medications for 6 to 12 months. What do participants do? Participants will be asked to provide blood samples every 3 months for a maximum of 18 months at their regularly scheduled clinic visits.  LEAP Study (Linking Exercise, Activity, and Pathophysiology in JIA) www.leapjia.com Research Question: Does physical activity improve or worsen disease activity in kids with arthritis, does it help or worsen bone and muscle development, and how does it overall affect their outcome? Who is eligible? Children 8-16 years old newly diagnosed with JIA What do participants do? Participants will be asked to fill out questionnaires, complete specialized bone scans and jumping tests, and provide blood samples every 6 months for 2 years (5 times).    PedANAM as a Screening Tool for children with SLE Research Question: Is the Pediatric ANAM computer test a useful tool for monitoring the cognitive status (how well your brain works) of patients with lupus? Who is eligible? Children with lupus 10-18 years of age What do participants do? You will be asked to take a 30-minute computer test every 6 months at the same time as your Rheumatology clinic visits.  Pediatric Vasculitis Study Research Question: What is the best way to diagnose, monitor and treat children and teens with vasculitis? Who is eligible? Patients newly diagnosed with vasculitis, and patients who participated in the ARChiVE or BrainWorks study, between 2-18 years of age, as well as healthy children between ages 7-18, are invited to participate. What do participants do? Newly diagnosed patients will be asked to provide blood and urine samples at diagnosis, 3-6 months and 12 months after diagnosis. All participants will also be asked to provide one saliva sample. Participants will have between 2 to 5 study visits, done at the same time as their usual clinic visit.  FOR MORE INFORMATION, VISIT http://tinyurl.com/rheumresearch  We want to hear from you!  If you are a parent/patient in the Rheumatology clinic and would like to contribute to the Rheumatology Research Newsletter, please contact our research coordinator at rheumresearch@phsa.ca  

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