CARRA Newsletter
April 25, 2016
What Caught Our Eye
By Ken Schikler, MD
 
After Rob Fuhlbrigge's previous entry regarding the "power of the mind" and physiologic symptoms, I thought it timely to bring up a somewhat related paper. As CARRA members, we are involved in clinical trials that assess the safety and efficacy of an "active intervention" as compared to a "sham" or placebo intervention. In "Genetics and the placebo effect: The placebome" ( Molecular Medicine, May 2015, vol 21, no 5, 285-294),  Hall, Loscalzo and Kaptchuk have reviewed what is known about genetics and the placebo effect with specific reference to pain reduction. This would have clear implications for those trials that include pain as an outcome measure in trials for the treatment of inflammatory diseases, as well as those conditions that are considered "non-inflammatory."
 

2016 Annual Meeting Update

Thank you to the 425+ attendees, sponsors, families, and all who helped make the Annual Meeting in Toronto a great success. Save the date for 2017! Please join us May 15-17 in Houston, TX, for CARRA's 2017 Annual Meeting!

Evaluations and Reimbursement: Meeting evaluations are required  for members requesting any travel reimbursement/support.  To complete your evaluation, please visit  http://www.cvent.com/d/gfq4kl .   

Stipend and reimbursement requests are due by Sunday, May 1st. Please review the process for requesting travel stipends and reimbursement: 
Annual Meeting Photo Highlights 
 
Jenn Woo, Jenna Tress, and Emily von Scheven discuss steroid tapering during the CARRA Annual Meeting
Norm Ilowite, Kelly Mieszkalski, and Peter Blier

Kristen Hayward and Andrea Knight
 
Rob Fuhlbrigge and the 2016 CARRA annual meeting program



40 abstracts were presented in Toronto. 
Publication will be in PROJ. Thank you to Stacy Ardoin and committee for the review and approval of the abstracts. Congratulations to the authors of the top three research posters presented during the Annual Meeting poster session:

Serum biomarkers for the diagnosis and monitoring of chronic recurrent multifocal osteomyelitis (CRMO)
R Hofmann, A Kubasch, U Range, M Laass, H Morbach, J Girschick, C Hedrich

Gene expression profiles from disease discordant twins suggest shared antiviral pathways and viral exposures among multiple systemic autoimmune diseases: Update from NIEHS twin-sibling study
L Gan, L Rider, T O'Hanlon, Z Lai, R Fannin, M Weller, J Chiorini and F Miller

Diagnosing childhood small vessel CNS vasculitis
M Twilt, M Nabavi Nouri, P Tyrrell, C Hawkins, S Benseler on behalf of the Canadian Neuropathology Childhood CNS Vasculitis Working Group

Registry Update

1100 subjects enrolled in the Registry.
26 subjects enrolled in STOP-JIA.

Improving Enrollment
CHOP staff

" It can be challenging to locate and enroll new patients in registry studies," notes Pam Weiss, Site PI for the Registry at CHOP. Pam has compiled a list of suggestions that have been effective for encouraging patient participation at CHOP.

If the clinic has a welcome letter, consider adding a paragraph (not CARRA-specific) that lets the family know that staff may approach them about participating in research.

Here is an example of a possible statement:

Our institution is a teaching institution that focuses on excellent care. One way in which we strive to improve this care is through research. If your child is eligible to participate in a study, we may approach you at the time of your visit to participate. Please view this opportunity as a chance to help impact the treatment not only of your child but of many other children with the same condition.

When the physician is discussing medication options with families, he/she may introduce the concept that one treatment algorithm may or may not be better than the other, and mention on-going studies for which the patient may be eligible.


ARTHRITIS FOUNDATION Announcements

Walk to Cure Arthritis is the Arthritis Foundation's annual community fundraising 5K walk event. We want everyone to get involved! The funds raised from the 5K support the critical missions of the Arthritis Foundation and CARRA and help to generate research aimed at finding a cure for arthritis. Walk to Cure Arthritis is a great way to get moving! For Walk locations near you, please visit the Arthritis Foundation website:
http://www.arthritis.org/get-involved/walk-to-cure-arthritis/walk-locations.php .

Connect with AF on Twitter! Follow  @ArthritisFdn.

With a theme of "Grow Together," the Arthritis Foundation and Arthritis Introspective will hold the  9th Annual National Gathering Conference on May 20 in Nashville, Tennessee. Learn more about the 9th Annual National Gathering Conference and register here.

The Arthritis Foundation recently underwent a strategic and geographic reorganization. They have a new office in Atlanta and a new regional division in the United States. Reach out to Grendel ( gburrell@carragroup.org
about how to participate in local and regional JA committees. 
View regional map and leadership here.

The Arthritis Foundation's JA Camps give children with arthritis and related conditions the chance to make lasting memories. For many campers, it is the first time they have met others who live with the same challenges. For more information, please visit the JA Camps website:

Funding Opportunities
 
The Lupus Foundation of America
The LFA seeks applications whose research results will significantly enhance the current understanding of the short- or long-term, physical and mental health outcomes of children and adolescents with lupus, as well as the long-term outcomes and late effects of childhood-onset lupus and its associated treatment. The ultimate goal of this research is to improve the health outcomes of individuals who develop lupus during childhood. Click here for additional information The Foundation is particularly interested in projects that utilize the lupus portion of the CARRA registry - the largest pediatric rheumatology registry in NA.

The 2016 Lupus Insight Prize recipient will be awarded $200,000 to be used for research dedicated to advancing understanding of the genetic, environmental, molecular, immunologic or cellular aspects of lupus and/or its treatment http://www.lupusinsightprize.org/ 

Pfizer provides grants for autoimmune and inflammatory disease research. Applications can be on basic research in the etiology of autoimmune and inflammatory diseases or clinical research. This program is available only to junior and senior investigators based in the United States. Awards can be up to a maximum of $150,000 each. Research projects are expected to be completed within two years. Larger grants may be considered depending on scope and merit of the proposal.  Review the process and opportunities here .

Connectivity 

Connect with CARRA on Twitter: Our new Twitter handle is @carra_inc . If you are active on Twitter, please follow us, like our posts, and retweet! To share suggestions for organizations and people that CARRA should follow on Twitter, email Heather at  hbarnes@carragroup.org
 
Curious to learn more about how Twitter can help you share your research ideas and stay connected with your CARRA colleagues? 
Contact Us:   1.800.377.5731      info@carragroup.org       www.carragroup.org