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Rheumatology research report, Vol. 10, issue 1, Winter 2013 Sarmiento, Angelyne; Hitchcock, Emma; Doctor, Felice 2013

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      Hot off the press!  Results from studies in our Division ?????What Matters the Most for Parents, Patients and  Clinicians in Predicting the Course of Juvenile Idiopathic Arthritis?    Juvenile idiopathic arthritis affects about one in a thousand  Canadian children. Some children have mild arthritis that requires little treatment and others have severe arthritis that requires aggressive treatment. Having a tool to help predict what to expect will be very helpful for children, their parents and their clinicians. Over the past 9 months, researchers conducted six focus groups with teens with JIA, parents of children with JIA, rheumatologists and allied health care professionals in Vancouver, Victoria and Ottawa.  The purpose was to gather their opinions on how to best develop such a tool. The project was funded by the Canadian Rheumatology Association. Thank you to the patients and parents who willingly contributed their time to this project. Below are some memorable quotes from our participants:  ?It's?kind?of?nice? to?be?able? to? talk? to?people? that?have?been? through? similar?things,?because?I?don't?really?know?anyone?else?who?has?arthritis.????Teen?with?JIA???I?think?it's?also?valuable?just?knowing?that?the?physicians?actually?care?for?our?input.?Like?it?makes?me?kind?of?feel?like?our?opinions?are?really?valued?because?of?the?fact?they've?developed?this?study.????Teen?with?JIA????Today?was?a?real?eye?opener?just?hearing?other?parents'?experiences,?knowing?that?I'm?not?alone.?Because? there's?days?where? I? feel? like?nobody?will? ever?understand?what? I'm? going? through.? Like? each? one? of? our? experiences? are? different,? so?we're?going?to?have?days?where?we're?not?going?to?see?eye?to?eye?on?things?even?though?our?children?have?the?same?disease.?But?today?I'm?taking?a?lot?away?with?me.?It?felt?really?good?that?we're?going?to?be?heard.?And?part?of?the?research?wasn't?to?get?a?support?group,?but?today?it?feels?like?that's?what?I?got?out?of?it.????Parent?of?newly?diagnosed?child?with?JIA??Announcements We would like to extend a warm welcome to Dr. Hend Al-Kwai who has recently joined us as a new Rheumatology fellow. She will be with our team in the coming years as she works to complete her Pediatric Rheumatology training.  We would also like to say thank you and farewell to Maureen Shirley who has been our clinic secretary for the past 15 years. We wish you all the best in your retirement and we will miss you!       Rheumatology??Research?Report?For?Patients?&?their?Families?Volume?10,?Issue?1?Winter?2013? Editor?s Space Happy 2013 and welcome to another issue of our research newsletter! 2013 is sure to be a busy but exciting year for our team as we continue to be national and international leaders in two multi-center studies on juvenile arthritis and childhood vasculitis.           Brandy?&?Dr.?Houghton?accepting?a?very?generous toy?donation?from?Mrs.?Koren?Carr,?Service?Manager?and?the?staff?and?clients?of?the?BMW?Store??Editor:?Angelyne?Sarmiento?Contributors:?Emma?Hitchcock,?Felice?Doctor?(Senior?editor:?Dr.?David?Cabral)?Division?of?Pediatric?Rheumatology,?BC?Children?s?Hospital??Tel:?(604)?875?2437??Fax:?(604)?875?3141??           In this edition of the newsletter, we will tell you about the importance of research registries, introduce you to some LEAP ambassadors, and provide an update on patient and parent focus groups held a few months ago.                 As always, you can also read about some of the research studies that are actively recruiting kids. Happy reading!  Best wishes for a happy and  healthy 2013!  ??Why?are?long?term?registries?important?in?Pediatric?Rheumatology?research??If you have been invited to a research study in the past, you may have heard the term ?registry? or ?database? from our research staff. Many research studies on arthritis, lupus, vasculitis and other rheumatic conditions involve the collection of de-identified medical data from your child?s chart. Information on your child?s symptoms, laboratory test results, and medications are combined with information from other children to form a database. These databases are rich sources of information and they help researchers answer research questions such as: How common is arthritis? Which treatment is more effective for kids with lupus?  LEAP Ambassadors  Your Rheumatology team isinvolved in a Canada-wide study called Linking Exercise, Activity and Pathophysiology in Juvenile Idiopathic Arthritis, also known as the LEAP Study. As part of this study, we are engaging active individuals to act as ambassadors and promote physical activity and exercise to kids with JIA.  Check out the LEAP website at http://www.leapjia.com to meet two of our LEAP Ambassadors: Travis Gerrits and Beatrice Bilodeau, both Canadian Freestyle Skiers.    We are looking for active people (both young and old!) who are physically active on a more local level (that is, from BC!!) to inspire and be a role model for physical activity and exercise for kids with JIA You do not have to be a high-level athlete or a member of a professional sports team. As an ambassador, we will ask you to answer a couple questions about why being active is important to you and to provide us with a picture of you participating in a physical activity.  Join us to inspire kids with arthritis to be more active!  If you are interested in becoming a LEAP ambassador, contact the LEAP Research Assistant at emma.hitchcock@cw.bc.ca or 604-875-2000 ext. 4748.  Juvenile Idiopathic Arthritis in the Media In October of 2012, one of our rheumatologists Dr. Lori Tucker was a speaker at a public talk titled Wired Caf?: Arthritis Management in a Digital World. The talk highlighted the ways in which current technologies such as social media and virtual realities can improve the lives of both young and old people with arthritis.  A few days later, Dr. Tucker was interviewed about JIA on the BC Almanac radio show on CBC Radio One. She was joined by a young adult who has had JIA since she was a toddler and her mom.   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 and are 8 to 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).    PedANAM as a Screening Tool for children with SLE Research Question: Is the Pediatric ANAM test a useful tool for monitoring the cognitive status (how well your brain works) of patients with lupus? Who is eligible? Children with lupus who are 10 to 18 years old 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 visit.  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 to 18 years old. 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.  If?you?have?any?questions?or?would?like?more?information?about?anything?mentioned?in?this?newsletter,?please?contact?Angelyne?Sarmiento,?Research?Coordinator?at?asarmiento@cw.bc.ca.?Research FAQs: Questions about research you?ve always wanted to ask!       Hot off the press!  Results from studies in our Division ?????What Matters the Most for Parents, Patients and  Clinicians in Predicting the Course of Juvenile Idiopathic Arthritis?    Juvenile idiopathic arthritis affects about one in a thousand  Canadian children. Some children have mild arthritis that requires little treatment and others have severe arthritis that requires aggressive treatment. Having a tool to help predict what to expect will be very helpful for children, their parents and their clinicians. Over the past 9 months, researchers conducted six focus groups with teens with JIA, parents of children with JIA, rheumatologists and allied health care professionals in Vancouver, Victoria and Ottawa.  The purpose was to gather their opinions on how to best develop such a tool. The project was funded by the Canadian Rheumatology Association. Thank you to the patients and parents who willingly contributed their time to this project. Below are some memorable quotes from our participants:  ?It's?kind?of?nice? to?be?able? to? talk? to?people? that?have?been? through? similar?things,?because?I?don't?really?know?anyone?else?who?has?arthritis.????Teen?with?JIA???I?think?it's?also?valuable?just?knowing?that?the?physicians?actually?care?for?our?input.?Like?it?makes?me?kind?of?feel?like?our?opinions?are?really?valued?because?of?the?fact?they've?developed?this?study.????Teen?with?JIA????Today?was?a?real?eye?opener?just?hearing?other?parents'?experiences,?knowing?that?I'm?not?alone.?Because? there's?days?where? I? feel? like?nobody?will? ever?understand?what? I'm? going? through.? Like? each? one? of? our? experiences? are? different,? so?we're?going?to?have?days?where?we're?not?going?to?see?eye?to?eye?on?things?even?though?our?children?have?the?same?disease.?But?today?I'm?taking?a?lot?away?with?me.?It?felt?really?good?that?we're?going?to?be?heard.?And?part?of?the?research?wasn't?to?get?a?support?group,?but?today?it?feels?like?that's?what?I?got?out?of?it.????Parent?of?newly?diagnosed?child?with?JIA??Announcements We would like to extend a warm welcome to Dr. Hend Al-Kwai who has recently joined us as a new Rheumatology fellow. She will be with our team in the coming years as she works to complete her Pediatric Rheumatology training.  We would also like to say thank you and farewell to Maureen Shirley who has been our clinic secretary for the past 15 years. We wish you all the best in your retirement and we will miss you!       Rheumatology??Research?Report?For?Patients?&?their?Families?Volume?10,?Issue?1?Winter?2013? Editor?s Space Happy 2013 and welcome to another issue of our research newsletter! 2013 is sure to be a busy but exciting year for our team as we continue to be national and international leaders in two multi-center studies on juvenile arthritis and childhood vasculitis.           Brandy?&?Dr.?Houghton?accepting?a?very?generous toy?donation?from?Mrs.?Koren?Carr,?Service?Manager?and?the?staff?and?clients?of?the?BMW?Store??Editor:?Angelyne?Sarmiento?Contributors:?Emma?Hitchcock,?Felice?Doctor?(Senior?editor:?Dr.?David?Cabral)?Division?of?Pediatric?Rheumatology,?BC?Children?s?Hospital??Tel:?(604)?875?2437??Fax:?(604)?875?3141??           In this edition of the newsletter, we will tell you about the importance of research registries, introduce you to some LEAP ambassadors, and provide an update on patient and parent focus groups held a few months ago.                 As always, you can also read about some of the research studies that are actively recruiting kids. Happy reading!  Best wishes for a happy and  healthy 2013! 

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