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Rheumatology research report, Vol. 10, issue 2, Spring/Summer 2013 Hitchcock, Emma 2013

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 ?????? ? ? ?????Hot?off?the?press!??????????? ??????????Results?from?studies?in?our?Division?? ? ??Measuring?What?Counts???????Currently, no objective method exists to assess the impact of arthritis and its treatment on the everyday lives of children with       juvenile idiopathic arthritis (JIA) in their communities. The    Measuring What Counts pilot trial study explored the use of iPhones and accelerometers as a possible way to build records of children?s physical activity and community participation before and after an injection to a joint in one or both legs. We invited patients in our Rheumatology clinic to help us with this study. 16 children and teens wore an iPhone and an accelerometer for 7 days before, and 7 days after they received their joint injection. The accelerometer measured the body movements, and physical activity of participants and the iPhones periodically recorded geographical location, and community participation of participants. The iPhones also asked participants about their level of pain and difficulty with activity they might be having periodically throughout the day.  Results?The Measuring What Counts pilot study showed that this method of collecting information works and it can be used to record daily physical activity and community participation in children with JIA. It showed trends that patients who received a joint injection in their leg(s) spent less sedentary time, or less time not moving, and had less reported pain with activity, after their joint(s) were injected. Participants in the pilot study did not show a significant difference between before and after the joint injection in other aspects of their lives. The next step is to use these methods in a larger study to document effects of treatment.  Announcements We would like to congratulate Dr. Kristin Houghton on the arrival of her new baby. Dr. Houghton will be away on maternity leave until December. We wish both Mom and baby a very happy and healthy summer!  We would also like to say goodbye and good luck to Dr. Abullatif Al Enazi who is leaving in June to go back to Saudi Arabia where he will continue to practice pediatric rheumatology. Dr. Al Enazi has been a valued member of our team and we wish him all best for the future!  ?Rheumatology??Research?Report?For?Patients?&?their?Families?Volume?10,?Issue?2?Spring/Summer?2013?  Editor?s Space Welcome to another issue of our research newsletter! I hope everyone has been enjoying the wonderful weather we have been having so far this spring. I am very excited to have the opportunity to be the guest editor for this edition of the newsletter.   In this edition of the newsletter, we will introduce two new studies that will be starting up this summer in Rheumatology, and provide the results of the Measuring What Counts study.  As always, you can also read about some of the research studies that are actively recruiting kids. Happy reading!          Drs?Mercedes?Chan?and.?Lori?Tucker?(left?and?right?center)?at?the?2013?Power?of?Movement?Fundraiser?for?arthritis?research???Guest?Editor:?Emma?Hitchcock??(Senior?editor:?Dr.?David?Cabral)?Division?of?Pediatric?Rheumatology,??BC?Children?s?Hospital??Tel:?(604)?875?2437??Fax:?(604)?875?3141??           The New Kids on the Block: Our Division?s Newest Projects  Patient Satisfaction Survey We want to know what you think! Starting in Summer 2013, the Rheumatology team is offering an optional and confidential survey for patients and their parents. The goal of the survey is to find out how patients and their families feel about the care they are receiving at the Rheumatology clinic. This survey is open to all families returning to the Rheumatology clinic for a follow-up visit. All parents, and patients aged 9 and older will be offered a survey as they check in to clinic. Please let any member of the research team know if you did not receive a survey.  This survey is following-up on a similar survey conducted by the Rheumatology team in 2003. The results from the new Patient Satisfaction Survey will be compared to results collected 10 years ago.  We hope to use the information to improve care we give to our patients and families!  PREVENT-JIA: Prevention of disease flares by risk-adapted stratification therapy withdrawal in JIA Currently about half of children with JIA in remission may have a flare of arthritis soon after stopping treatment. If we could predict which patient was likely to flare when stopping treatment, we might be able to stop treatment earlier in some children, and continue treatment longer in other patients to avoid flares. The PREVENT study will be looking at a new biomarker in the blood of children with Juvenile Idiopathic Arthritis (JIA) which might detect even low grade disease activity (inflammation). In particular, we will be trying to determine whether this biomarker will help predict the risk of disease flare after a child with JIA in apparent clinical remission is taken off methotrexate, biologics and other medications. Patients diagnosed with JIA that are 18 years old or younger, and have gone into remission, but are still taking medication will be invited to participate starting in Summer 2013. Participants will be asked to provide a blood sample to test for the biomarker and complete questionnaires. Blood would be collected every 3 months, for a total of 6 samples at the routine times for blood test monitoring.        Open invitation: Rheumatology Studies Currently Recruiting Patients  LEAP Study (Linking Exercise, Activity, and  Pathophysiology in JIA) Research Question: How does physical activity affect the  disease progression, bone and muscle development (does it make it  better or worse), and outcomes of kids with arthritis? Who is eligible? Children who are newly diagnosed with JIA, 8-16 years old. 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).   Website: www.leapjia.com   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.  Teens Taking Charge Research Question: Is the ?Teens Taking Charge: Managing Arthritis Online? program useful and effective in helping teens learn more about JIA? Does it teach them how to take better care of their health? Who is eligible? Teens with JIA between 12-18 years of age. What do participants do? Teens will be asked to visit a special website for the 12-week study period and work through the web modules.  They will also receive a monthly phone call from a health coach.  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. ??We?want?to?hear?from?you!??Why?is?it?important?to?participate?in?research??If?you?are?a?parent?or?patient?in?the?Rheumatology?clinic?and?would?like?to?contribute? to? the? Rheumatology? Research? Newsletter,? please? contact?Angelyne?Sarmiento?at?(604)?875?200?ext.?5091?or?asarmiento@cw.bc.ca?? ?????? ? ? ?????Hot?off?the?press!??????????? ??????????Results?from?studies?in?our?Division?? ? ??Measuring?What?Counts???????Currently, no objective method exists to assess the impact of arthritis and its treatment on the everyday lives of children with       juvenile idiopathic arthritis (JIA) in their communities. The    Measuring What Counts pilot trial study explored the use of iPhones and accelerometers as a possible way to build records of children?s physical activity and community participation before and after an injection to a joint in one or both legs. We invited patients in our Rheumatology clinic to help us with this study. 16 children and teens wore an iPhone and an accelerometer for 7 days before, and 7 days after they received their joint injection. The accelerometer measured the body movements, and physical activity of participants and the iPhones periodically recorded geographical location, and community participation of participants. The iPhones also asked participants about their level of pain and difficulty with activity they might be having periodically throughout the day.  Results?The Measuring What Counts pilot study showed that this method of collecting information works and it can be used to record daily physical activity and community participation in children with JIA. It showed trends that patients who received a joint injection in their leg(s) spent less sedentary time, or less time not moving, and had less reported pain with activity, after their joint(s) were injected. Participants in the pilot study did not show a significant difference between before and after the joint injection in other aspects of their lives. The next step is to use these methods in a larger study to document effects of treatment.  Announcements We would like to congratulate Dr. Kristin Houghton on the arrival of her new baby. Dr. Houghton will be away on maternity leave until December. We wish both Mom and baby a very happy and healthy summer!  We would also like to say goodbye and good luck to Dr. Abullatif Al Enazi who is leaving in June to go back to Saudi Arabia where he will continue to practice pediatric rheumatology. Dr. Al Enazi has been a valued member of our team and we wish him all best for the future!  ?Rheumatology??Research?Report?For?Patients?&?their?Families?Volume?10,?Issue?2?Spring/Summer?2013?  Editor?s Space Welcome to another issue of our research newsletter! I hope everyone has been enjoying the wonderful weather we have been having so far this spring. I am very excited to have the opportunity to be the guest editor for this edition of the newsletter.   In this edition of the newsletter, we will introduce two new studies that will be starting up this summer in Rheumatology, and provide the results of the Measuring What Counts study.  As always, you can also read about some of the research studies that are actively recruiting kids. Happy reading!          Drs?Mercedes?Chan?and.?Lori?Tucker?(left?and?right?center)?at?the?2013?Power?of?Movement?Fundraiser?for?arthritis?research???Guest?Editor:?Emma?Hitchcock??(Senior?editor:?Dr.?David?Cabral)?Division?of?Pediatric?Rheumatology,??BC?Children?s?Hospital??Tel:?(604)?875?2437??Fax:?(604)?875?3141??       

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