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CARRA Newsletter - July 2019 Issue 2

 

Congratulations to our Recent Grant Awardees!

CARRA is pleased to announce the recipients of the most recent round of CARRA-Arthritis Foundation Grants!  The CARRA members below were recently awarded one-year grants with project dates of July 1, 2019 – June 30, 2020. Click on the title of each grant to read the lay summary!

 

Fellow Grant Recipients

In this Issue...

Grant Award Recipients

PReS Travel Award Recipients

Fall Grant Cycle

JA Family Day Recap

Registry Enrollment Update

Arthritis Foundation Updates

Upcoming Events

 

Rosemary Peterson, MD
Children’s Hospital of Philadelphia

Nadine Saad, MD
Hospital for Special Surgery

Tamara Tanner, MD
Montefiore Medical Center

“Biologic Discontinuation in Systemic JIA Predictors of Subsequent Disease Flare: A Cohort Study in the Childhood Arthritis and Rheumatology Research Alliance Registry”

“Creation and Validation of a Modified Auto-inflammatory Disease Index (AIDAI) in Periodic Fever, Aphthous Stomatitis, Pharyngitis, and Cervical Adenitis (PFAPA) Syndrome”

“Association between UV Index and Disease Flare in Pediatric SLE Patients”

 

Small Grant Recipients

Kaveh Ardalan, MD, MS
Ann & Robert H. Lurie Children’s Hospital of Chicago

Stephen Balevic, MD, MHS
Duke University Medical Center

Kristine Carandang, PhD, OTR/L
University of California, San Diego

“Mental Health Screening in Juvenile Myositis: Pilot and Feasibility Study”

“Hydroxychloroquine Dosing and Pharmacokinetics in Pediatric Lupus”

“Eliciting Perspectives of Adolescents and Young Adults with Pediatric Rheumatic Conditions around the Implementation of Healthcare Transition”

     

Christian Hedrich, MD, PhD
University of Liverpool

Polly Ferguson, MD
University of Iowa

Mei-Sing Ong, PhD
Harvard Pilgrim Health Care

“Patient Stratification through Muscular Immune Phenotyping in Psoriasis and Psoriatic JIA”

 

“Serious Infectious Complications Associated with Rituximab use in Children with Rheumatic Diseases”

     

Kaila Schollaert-Fitch, MA
University of Pittsburgh

Emily Smitherman, MD
University of Alabama at Birmingham

Susan Thompson, PhD
Cincinnati Children's Hospital Medical Center

“Feasibility and Reliability of Handheld 3D Photogrammetry for Imaging Linear Scleroderma of the Head”

“Evaluating Care and Outcomes in Childhood-Onset Systemic Lupus Erythematosus”

“Comprehensive Assessment of Viral Exposures in JIA patients”


PReS/EULAR Travel Award Recipients

CARRA Members at EULAR/PReS
(Left to Right) Brian Feldman, Rob Fuhlbrigge, Natalie Rosenwasser, Dan Horton, Kaveh Ardalan, Erica Lawson

CARRA wants to congratulate CARRA Early Investigators Daniel Horton of Rutgers University and Natalie Rosenwasser of the Hospital for Special Surgery for being selected as this year’s recipients of the PReS (Pediatric Rheumatology European Society)/EULAR Travel Award.  Drs. Horton and Rosenwasser traveled to Madrid, Spain, to represent CARRA Early Investigators (along with Early Investigator Chair Erica Lawson and Vice Chair Kaveh Ardalan), present their abstracts at the EULAR European Congress of Rheumatology 2019, a joint congress with Pediatric Rheumatology European Society (PReS) annual meeting, and participate in the EMEUNET-PReS EMERGE Young Investigators Meeting.  CARRA provided each recipient with up to $2,500 in travel support.

       

Daniel Horton, MD
Oral Glucocorticoids and Incident Diabetes Mellitus, Hypertension, and Thrombosis in Children with Chronic Diseases
Rutgers University
Read about his experience

 

Natalie Rosenwasser, MD
Development of Novel Urinary Biomarkers for Lupus Nephritis
Hospital for Special Surgery
Read about her experience


Fall 2019 Grant Cycle Updates

CARRA offers members various funding and internship opportunities to further research that leverages the CARRA network and positively impacts the pediatric rheumatology scientific community and advances the CARRA mission.

NEW REQUIREMENT FOR LARGE, SMALL, & FELLOW GRANTS UTILIZING THE CARRA REGISTRY OR CARRA DATA/SAMPLES

Grant applicants that intend to utilize the CARRA Registry or CARRA-related data and/or samples (including Legacy Registry and APPLE data/samples) must receive approval from the CARRA Data Sample Share Committee (DSSC) prior to submitting their grant applications.  Applicants will be required to provide documentation of DSSC approval at the time of submitting a grant application. The request must match the intended use outlined in the grant proposal. Failure to receive approval of the data and/or sample request prior to submission of the grant application will result in the administrative decline of the application.

Data/sample requests take up to 4 weeks for review and approval. Please keep this in mind as you plan your grant application. For more information on requesting data/samples and to access the request form, please visit the CARRA Data and Samples Request area of the wiki.

For the upcoming grant cycle, October 1 deadline, it is recommended that you submit your data/sample request no later than August 26. If you have any questions regarding this requirement, email [email protected].

If your application will propose collection of any new data or biosamples via the CARRA Registry and/or via CARRA sites, you must include a letter of support (LOS) from CARRA’s Research and Registry Oversight Committee (RROC).  Email [email protected] with a brief summary of your proposal and CARRA will work to schedule a call with you to discuss your application as soon as possible.

 

CARRA-Arthritis Foundation Large Grant: Letter of Intent due September 1

This funding opportunity supports the development and publication of a clinical or translational project which will immediately impact research projects within CARRA or result in a larger collaborative grant that furthers the CARRA mission. New or early investigators are encouraged to apply and will be afforded special consideration. A successful application may be for:

  • an all-inclusive clinical or translational research project; or
  • a pilot research project, that if successful, could lead to extramural funding.

Preference will be given to submissions which are collaborative and leverage current CARRA network resources or will further develop the CARRA network.

Full Large Grant Submission Details

 

CARRA-Arthritis Foundation Small Grant: Applications due October 1

This opportunity is available to support projects in development. New or early investigators are encouraged to apply and will be afforded special consideration. The research project can be a pilot, continuation of ongoing research, or other projects that move forward clinical or translational research that furthers the CARRA mission. Preference will be given to research that is collaborative in nature, which leverage current CARRA network resources and/or will further develop the CARRA network.

Full Small Grant Submission Details


JA Family Days – Share Your Stories With Us!

Raleigh JA Family Day

Lenny Stein & Eve Wu

CARRA members in central North Carolina came together recently to support their patients and family members and the Arthritis Foundation at the Raleigh JA Family Day, held at the Marbles Kids Museum.

For those of you who may not know, the Arthritis Foundation hosts Juvenile Arthritis (JA) Family Days throughout the year and around the country to help kids and their families live better with arthritis and other childhood rheumatic disease. These informative programs are supportive and FUN events that deal with various aspects of living as a kid with arthritis, including an overview of the disease, medications, pain management techniques, exercise and more!

The JA Family Days are a great experience for the children with arthritis, their parents or caregivers and siblings. Attendees express that the greatest benefit of these programs is getting to meet others who are dealing with similar issues, who share some of the same feelings, experiences and concerns. It’s a place to exchange ideas, give and receive encouragement, and make new friends.

Over 60 attendees came to the Raleigh JA Family Day, including patients and family members, pediatric and adult rheumatologists (and CARRA members!), a pediatric social worker, event sponsors, in addition to Arthritis Foundation staff. CARRA’s own Executive Director, Kelly Mieszkalski, staffed a CARRA table and spoke with attendees about participating in research, the CARRA Registry, and the incredible impact the Arthritis Foundation partnership has had in being able to offer more research opportunities to more patients through the CARRA Registry, the CARRA-Arthritis Foundation grant program, and through the PARTNERS network.

The day started out with families and other attendees breaking up into teams of five, with each team member participating in a different and fun contest to try and score points for their team. Participants were challenged to 1) wear stockings over their head and be the first to knock over their solo cups by swinging their “elephant trunks”, 2) be the first to sort a box of M&M’s by color; 3) be the first team to successfully “mummify” their partner by wrapping them in a roll of toilet paper (the WHOLE roll!), and 4) be the first person to shake 6 ping pong balls out of a Kleenex box strapped to their bum in the “booty shake” game. CARRA’s Executive Director Kelly Mieszkalski joined a local family’s team and was the Booty Shake representative. We think you can tell by the photo who won that particular game J (and helped her family achieve a victory!). Click here to see photos from the day!

Adult and pediatric rheumatologist, Dr. Rebecca Sadun, gave an informative talk about transition and transfer of care and why it is so important to start talking about transition of care multiple years in advance. The super young kiddos were able to sneak out of the room during this part of the day, and had a ton of fun exploring the very interactive kids museum.

Families were able to network and get to know each other more deeply over lunch, before saying good bye until their next doctor’s appointment or next Arthritis Foundation event.

Why We Participate

“JA Family Day is a wonderful chance to see families outside of the usual clinical context.  In addition to providing us with the opportunity to discuss topics we often can’t include in a typical clinic visit, it’s a joy to be able to play with and eat with our patients and their families, getting to know them in new ways.  Importantly, JA Family Day also provides our young patients a chance to meet other children with arthritis, siblings a chance to interact with other siblings, and parents a chance to form a supportive community based on their shared experience.  Families’ appreciation of the event is always palpable – and without fail, a good time is had by all!” –Rebecca Sadun, Duke

“I really enjoy attending the JA events, as they are always fun, educational and inspirational! There are many barriers to obtaining good healthcare, and one of our roles is to help patients and families navigate through, around or beyond these barriers. Participation in JA family day events emphasizes the partnership between children, families and healthcare providers, and helps facilitate further communication channels to overcome these barriers."—Lenny Stein, UNC-Chapel Hill (retired)

 “I participate in the JA Family Day because it gives me an opportunity to hear patient/family concerns outside of clinic and, more importantly, watch kids with arthritis have fun with each other. It’s a great reminder for us as providers of why we do the work we do.” --Cory Stingl (Duke)

“JA Family Days are highly rewarding. It is always a pleasure to give families affected by arthritis the opportunity to learn more about the disease and meet others who are similarly affected–and in a fun and entertaining venue!”  Eve Wu, UNC-Chapel Hill

CARRA would like to extend a very special thank you to CARRA member and CARRA Registry Site PI, Eve Wu, for organizing and being the cheerleader to bring CARRA members (and others!) to the event. Eve Wu is also the Medical Chair for the local Arthritis Foundation Leadership Board. We would also like to thank local Arthritis Foundation Staff members Stephanie Blazek and Erica Bowles for including CARRA in the event!

See photos from the event here!

To learn about the upcoming JA Family Days in your area, please reach out to your local Arthritis Foundation staff, visit the Arthritis Foundation's Resource Finder or call 800-283-7800 for information about the Arthritis Foundation office closest to you. If JA Days are not scheduled in your area, consider partnering with your local Arthritis Foundation office to organize one!”

Are you participating in your local JA Family Day? Please tell us about it! Email CARRA’s Communication Manager, Ashton Woll ([email protected]) with a short write up and some photos from your day. If you would like to host a CARRA table at your own local JA Family Day, we will send you a box of “CARRA goodies” to hand out—including Registry newsletters, CARRA Registry brochures, PARTNERS flyers, in addition to CARRA pens, stickers and more! Contact the CARRA business office at [email protected] at least two weeks before your event.


Registry Enrollment Update (as of 7/19/19)

As of July 19th, CARRA has 8,770 patients enrolled in the CARRA Registry! Highlights include:

  • The 1st scleroderma patient has been enrolled via the SCORE study!  
  • 7896 patients with JIA, 557 patients with SLE and related conditions, 105 patients with JDM or JPM, and 1 scleroderma patient have been enrolled!
  • 250 biosamples have been collected (including the first SCORE biosample)! 
  • 64 of 100 patients are now enrolled in the FROST study!

Reminder: Lupus Biosample Collection has Begun!

Eligibility: Newly enrolled SLE/related conditions patients who are also:

  • Enrolled at a CARRA Registry site with centrifuging capabilities
  • Enrolled within 6 months of diagnosis
  • Untreated (no prior steroids/biologic or non-biologic DMARDs; prior NSAID use is ok)

Collection Time Points for SLE samples: Baseline (+ 1 month); 6 months (+/- 2 months); 12 months (+/- 2 months).

 

Contact DCRI with any questions about lupus biosample collection at [email protected]

Thank you to all of our CARRA Registry sites for all of your hard work!


Arthritis Foundation Updates

 

July is JA Awareness Month!

It’s time to celebrate our JA Warriors! This month, help spread awareness about the nearly 300,000 kids nationwide who suffer from JA, and salute their bravery, strength and determination to fight arthritis. They prove to us every day that they are #StrongerThanJA.

Help Give Kids the Chance to Feel Included!

JIA Voice of the Patient Report Published

This report was created to summarize results from the externally-led PFDD meeting about JIA.

Arthritis patients have spoken: “We want safer, more effective, easier-to-use and less-painful-to-administer treatments that are less likely to cause potential long-term side effects. We need solutions to the challenges of dealing with comorbidities and multiple treatment changes.”

Read the full report here


Important Upcoming Dates