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CARRA Newsletter - April 2020

 

CARRA Annual Scientific Meeting

Cancellation Details


Since the World Health Organization’s declaration of COVID-19 as a global pandemic and the recent National State of Emergency issued by President Trump, CARRA has decided to cancel the upcoming in-person Annual Scientific Meeting scheduled for April 26-29, 2020 in New Orleans. The American College of Rheumatology's Pediatric Rheumatology Symposium, which immediately follows CARRA’s program, has also been canceled.

We want to extend our gratitude to everyone who has contributed to the development of CARRA’s Annual Scientific Meeting over the past year. Your work will not go unseen as we are currently discussing next steps and ideas for disseminating information that would have been presented at the Annual Scientific Meeting.

For more information about CARRA’s cancellation processes, click here.

For any questions, please contact Gretchen Ponzer, Meetings Manager, at [email protected] or 414-231-8268.

Thank you to CARRA’s premier partner, the Arthritis Foundation, for sponsoring the CARRA Annual Scientific Meeting. CARRA would also like to thank our supporting sponsors: Novartis, AbbVie, Amgen, BMS and Genentech.     


CARRA Registry Retreat: Recap

                         

CARRA hosted its 2nd Annual CARRA Registry Retreat last month in Dallas, TX. Coordinators, principal investigators and sub-investigators from 60 CARRA Registry sites were represented, along with patient and family representatives, DCRI and CARRA staff. The goal of the annual retreat is to facilitate and improve the experience of participating in the Registry by actively engaging with participants through small group discussions, panel presentations, brainstorming, problem solving, and training. This year’s retreat focused on ways to enhance the collection of data, biosamples, and Patient Reported Outcomes (PROs) as well as how to improve the long term follow-up of our patients through the use of the CARRA call center. The results from the discussions are being used to set future strategy and help take the CARRA Registry to the next level.

The CARRA Registry set out with a goal of enrolling 10,000 patients, which CARRA has now surpassed! Thank you to all of our members, coordinators, providers, partners, patients and caregivers who have helped us reach this milestone and thank you to everyone who helped make our 2nd Annual CARRA Registry retreat a great success!

Click here to view more photos from the retreat!


 
   

Lupus Foundation of America Accepting Applications to Fund Critical Lupus Research

Applications Due April 17*

Apply Now!

The Lupus Foundation of America is pleased to announce we are accepting grant applications for three critical awards aimed to develop the next generation of lupus scientific leaders.

This year, we have expanded the eligibility criteria for the Gary S. Gilkeson Career Development Award (CDA) and added another grant mechanism through our new partnership with Lupus Canada, the Lupus Canada Catalyst Grant.  All three awards aim to cultivate and support early lupus researchers and encourage the brightest and most innovative scientists to pursue a career in lupus research.  We need more trained researchers to help us solve the cruel mystery of lupus.

GARY S. GILKESON CAREER DEVELOPMENT AWARD

This award will support the professional development for fellows (any year), clinician-scientist, or a Postdoctoral researcher up to two years post-fellowship in nephrology, rheumatology, and dermatology in the U.S. and Canada who are interested in lupus research.

  • Four grant awards of up to $70,000 each for up to two years.

GINA M. FINZI MEMORIAL STUDENT SUMMER FELLOWSHIP PROGRAM

The award will foster an interest among students in undergrad and graduate programs who are interested in research relevant to lupus.  Students are required to identify and work under the supervision of a qualified investigator in the U.S., Canada, or Mexico.

  • The program will award six summer fellowships of $4,000 each.

LUPUS CANADA CATALYST GRANT

Catalyst grants are intended to help kick start a new project or research idea focused on discoid or systematic lupus erythematosus (SLE).  This grant provides support to Canadian investigators to initiate new research ideas and projects and is intended to complement rather than compete with traditional sources of funding such as the Canadian Institutes for Health Research (CIHR).

  • One Catalyst Award for a total of $35,000 CDN* to fund one project for a term of one year.

*subject to USA/CDN exchange rate at the time of the award

Applications are due April 17*, 2020 at 5PM EST

*The RFA deadline is scheduled for April 17th. In the event that an applicant is unable to submit by this deadline due to COVID-19 related matters, please request permission to submit a late RFA to [email protected] stating why you need the extra time and provide a date which you can complete the application. The LFA will evaluate any requests on a case by case basis.

To learn more about each grant and how to apply, please visit: lupus.org/research/apply-for-funding


RFA: PreS Travel Award

Application Deadline: April 20

CARRA is funding up to 2 travel awards for Early Investigators and/or fellows to attend the Pediatric Rheumatology European Society (PReS) annual meeting, and the preconference meeting for young/early investigators. This opportunity is open to all CARRA US and Canadian Early Investigators (members who finished fellowship in 2013 or later) and fellow members. This is an outstanding meeting and a great chance to present your work and network.

The 2020 PReS Annual Meeting will be held in Prague, Czech Republic, from September 23 through September 26.

For requirements and eligibility details, click here.


 
   

2020 VERITY Pilot & Feasibility Research Award – Applications Open

Application Deadline: June 25, 2020

VERITY (Value and Evidence in Rheumatology using bioInformaTics, and advanced analYtics) is a NIAMS-funded P30 awarded to Brigham and Women’s Hospital. Within its first year of infancy, VERITY has gained momentum in the rheumatic and musculo-skeletal research world. Not only has it established three cores (Administrative, Bioinformatics and Methodology cores) and the VERITY/Brigham Course in Rheumatology Clinical Research under the P30, it has also launched the VERITY Pilot & Feasibility (P&F) Research Award.

  • This award is a NIAMS-supported $20,000 grant that is aimed at providing seed funding for new projects as well as to offer an opportunity to the VERITY Research Community to develop skills in proposal preparation.
  • All applicants must be a member of the VERITY research community and the selection committee will favor VERITY young investigators (rank of Assistant Professor or below) who have not been awarded an R01 grant or equivalent. Previous VERITY P&F awardees include, Aleksander Lenert, MD, of the University of Iowa Hospitals and Clinics, and Lily Li, MD, of Brigham and Women’s Hospital.
  • The 2020 award application is due June 25, 2020 at 5:00PM ET.

To learn more information on VERITY and the P&F Research Award, please visit http://www.verityresearch.org/.


CARRA Registry Update        

      

Message for our Research Sites on COVID-19

The World Health Organization officially declared the COVID-19 outbreak a pandemic on March 11, 2020. As cases of the virus surge in countries around the world, many countries are taking extreme steps to mitigate the outbreak, including whole country lockdowns. Here in the United States, the President declared a national emergency on March 13, 2020. As the situation changes, many hospitals are implementing new policies and procedures for patient care visits and for research participation.

CARRA is the sponsor of the CARRA Registry, an observational study that collects clinical and patient reported information about patients with pediatric-onset rheumatic diseases, which has enrolled over 10,000 patients at 70 institutions in the US and Canada. At this time, all Registry sites should follow their institutional policies and procedures regarding conduct of all research, including Registry activities. CARRA Registry sites with any questions should contact Registry personnel at the Duke Clinical Research Institute (DCRI), the CARRA Registry coordinating center.

CARRA sends our most heartfelt wishes to all members, collaborators, and supporters, research participants and their families for continued health and wellness during this difficult and uncertain time.

Message for Patients

If you are a parent or patient and have questions about COVID-19 and/or how your participation in a CARRA-sponsored research project study is impacted by the pandemic, please reach out to your local provider.

For answers to frequently asked questions regarding COVID-19, please visit the Arthritis Foundation’s website (https://arthritis.org/about-us/news-and-updates/coronavirus-and-arthritis-what-you-need-to-know) which is updated frequently as the situation changes. Other condition-specific patient organizations may have similar web pages with information about your or your child’s diagnosis.   

As of March 27, CARRA has enrolled 10,395 patients in the CARRA Registry, including:

  • 9,085 patients with JIA
  • 754 patients with SLE and related conditions
  • 183 patients with JDM or JPM
  • 45 patients with scleroderma

Other highlights include:

  • 427 biosamples have been collected!

RFA to Support Research Activities at the 2020 Juvenile Arthritis Conference (JAC)

Application Deadline: April 15*

The CARRA-Arthritis Foundation JAC Research Grant is available to CARRA members who wish to conduct research activities at the Arthritis Foundation’s 2020 National Juvenile Arthritis Conference (JAC). The 2020 JAC will be held from July 23-26 in Orlando, Florida. The JAC is a four-day educational conference aimed at helping parents and caregivers learn about the latest medical research and treatments, understand how to deal with challenges at school and home, and discover how to become an advocate for their child and for all kids with rheumatic diseases.‚Äč

Interested in submitting an application? Here’s what you need to know

  • There is no pre-specified number of grants available, nor is there a pre-specified dollar amount available.
  • To ensure that your research activity has received IRB approval or determination of IRB exemption in time for the conference, all applicants must submit their research activity/study to their individual IRB prior to the application deadline.
  • Applicants will be required to submit documentation of submission as part of their application materials. See below for additional information.

For more information, click here.

*Applications are due April 15. If you need a short extension due to COVID-19, email [email protected] as soon as possible. Extensions will be granted on a case by case basis.


Arthritis Foundation Updates       

Nationwide Virtual Walk to Cure Arthritis

Saturday, May 16

To protect the health and safety of the community, the Arthritis Foundation will be hosting all of this year's Walk to Cure Arthritis events virtually on Facebook on Saturday, May 16 at 4pm.

The goal is to bring Arthritis Familes together while apart. Mark the calendar and plan to join live for conversations and sharing why we "Walk!” There will also be a virtual Walk to Cure Arthritis Kick-off on April 1st at 1:00pm. Connect here via Zoom to join.

We hope you will join us to learn more about how the Arthritis Foundation is going to bring the Live Yes! experience to you in the weeks ahead! Make sure to like the Arthritis Foundation’s Facebook page to find info and resources leading up to the virtual walk and to join us for our new Carolina Coffee Series and Live Yes! Lunch Breaks.

CARRA is a Walk To Cure Arthritis (WTCA) National Team     

CARRA is excited to participate again this year as a Walk To Cure Arthritis National Team in support of our partner, the Arthritis Foundation. By supporting Team CARRA, you are helping to continue the work of our two organizations in finding the cure for arthritis and providing resources to patients with childhood rheumatic diseases and their families. 

Walk teams are a fun way to network with families outside of the clinic!  Simply go to the CARRA National Team page on the Arthritis Foundation website to START or LINK your current team. 

Money raised by your team will be credited to your local Arthritis Foundation WTCA Team and CARRA is recognized for their support of the Arthritis Foundation.  A win-win!

You can also donate to the CARRA Virtual Team.  Click here to find out how.

If you have questions about setting up or linking your team, contact Vincent Del Gaizo at [email protected] or 908-303-9037.

JA Families Online Community

The Arthritis Foundation’s LIVE Yes! Online Community offers 24/7 support and education for parents/caregivers of kids and teens with arthritis and related childhood rheumatic diseases. The JA Families discussion forum connects parent/caregivers to the most powerful source of support for families living with the daily struggles of JA – each other, and there is even a place to ask questions directly to a Rheumatologist. Over 300 questions have been answered by Health Care Providers in our “Ask the Professionals” discussion forum. Register or login to the Online Community by visiting https://arthritis.org/liveyes. Once logged in click “Join a Discussion” to see all discussion forums.


Important Upcoming Dates