CARRA April 2021 Newsletter - Issue 1


Congratulations to the First CARRA-PReS Collaborative Research Award Recipients!

Congratulations to Co-PI’s Rebecca Sadun (Duke University), Eve Smith (University of Liverpool), Jennifer Cooper (University of Colorado), and Alexandre Belot (University Lyon I) who were selected as the inaugural recipients of the CARRA-PReS Collaborative Research award for their project entitled, Identifying Cross-Registry Commonalities to Facilitate International Pediatric Lupus Research.

Childhood-onset lupus (cSLE) affects a quarter million people worldwide. Lupus registries, which contain patient information and samples, are a powerful way of studying how lupus affects children, predict disease severity, and identify the most effective treatment strategies. CARRA has a North American registry, the UK has a national registry, and nine other European countries use a third cSLE registry, each of which has a slightly different approach to collecting patient reported outcomes, clinical data, and blood/urine samples. The goal of this proposal is to see where the registries are aligned and where they can be better aligned to facilitate research across all three registries. Such research will be much more powerful than research in any single registry. In addition, this project will bring together international lupus researchers and patients/parents from Europe and North America to lay a strong foundation for cSLE research projects worldwide.

The goal of the CARRA-PReS Collaborative Research Award is to support collaborative research activities between CARRA and PReS early career investigators. Learn more about PReS here. CARRA will be accepting grant applications for this funding mechanism again this fall. Stay tuned for more details!

         AOII Selects Three CARRA-Arthritis Foundation Grants for Sponsorship

Since 1967, Alpha Omicron Pi (AOII) has enjoyed an important partnership with the Arthritis Foundation. AOII funds not only support the Arthritis Foundation’s Juvenile Arthritis Power Packs, Juvenile Arthritis Camps and Conferences, they support our CARRA-Arthritis Foundation grants! This year, AOII has selected the following CARRA-Arthritis Foundation grants for sponsorship:

  • Understanding the Genetics of Childhood-onset Systematic Lupus (PI: Linda Hiraki, MD, FRCPC, ScD, The Hospital for Sick Children)
  • Biologic Switching and Treatment Effectiveness in JIA (PI: Yukiko Kimura, MD, Joseph M. Sanzari Children’s Hospital, Hackensack Meridian School of Medicine)
  • Emotional Distress and Acceptance of Mental Health Interventions in Pediatric Rheumatology (PI: Erin Treemarcki, DO, University of Utah)

Learn more about these exciting new projects here.

Andrea Dill, AOII Foundation President, shares, “The AOII Foundation and Fraternity are honored to be funding three significant CARRA-Arthritis Foundation research grants for the coming year. It is especially heartwarming to support three admirable female researchers in their important work while also providing funds to Canadian and USA research projects. It is our sincere hope that the three selected grants will provide outcomes that prove beneficial to the arthritis community.”

Thank you, AOII, for your support!

NEW! Biosample Stimulus Funding Mechanisms

The TRTC is excited to announce two mechanisms to promote CARRA biosample collection in CARRA:  

  1. (April 1, 2021) CARRA Executive Committee (EC) Biosample Collection Stimulus Fund: A limited amount of funding (up to $25,000 per project) is available via a CARRA EC Biosample Collection Stimulus Fund to support new biosample collections, with priority given to projects of CARRA members that 1) have been peer reviewed and funded (e.g., NIH, RRF) and 2) involve standard CARRA biosample collection kits.

Applications will be accepted and reviewed on a rolling basis until all funds have been utilized. Please allow up to four weeks for review of and decision on your application.

Click here to learn more!

  1. (Coming Fall 2021) Advancing Biosample Collection Grants:  An RFA under development is intended to support biosample cohorts via the CARRA Registry. Under this mechanism CARRA members will be able to apply for Advancing Biosample Collection (ABC) grants that will be used to support biosample collection for specific translational research projects.

Contact the TRTC Chair (Lauren Henderson, [email protected]) and TRTC Vice Chair (Grant Schulert [email protected]) with any questions.

Funding for both mechanisms is provided by the Arthritis Foundation.

 NEW! CARRA Brings on a Biostatistician to Support the Path to Publication

CARRA is pleased to announce that it has employed the help of an experienced biostatistician to work collaboratively with members who have an interest in conducting research utilizing the Registry, but who have not been able to find the biostatistical support needed to make progress towards manuscript development and publication.

CARRA members will be able to apply online through the CARRA wiki.  Dr. Tim Beukelman, the CARRA Registry Scientific Director, has created a video tutorial on how to access this new support service.

Resources such as FAQs and  detailed instructions are also available. Click here to learn more.

News and Notes

Reminder: CARRA Registry Re-consent Deadline Extended

  Due to the challenges of re-consenting patients in the midst of  COVID, CARRA    is extending the deadlines for additional site payments tied to re-consent:

  •   $75 for each participant re-consented before 6/1/2021.
  •   $50 for each participant re-consented between 6/1/21 – 7/1/21.
  •   Sites will receive payment twice a year directly from CARRA. Payment      confirmation will be triggered upon upload of the re-consent documents into RAVE and completion of the new opt in/opt out check boxes for text, email, and health ID linkage in the Contact Database.
    • Payments will be over and above the standard site payments issued from DCRI.

‚ÄčTo further facilitate re-consenting, participants may be re-consented over the telephone or electronically rather than in-person.


Power Hour Recap: Best Practices for E-consenting & Reconsenting

In order to further assist Registry sites with re- consenting, CARRA hosted a webinar focused on answering questions around e-consenting, as well as sharing best practices for e-consenting and re-consenting. This included a recorded demonstration of how to use DocuSign during a telemedicine visit!

Watch the recording of the webinar here.

If you have attended any of the Power Hour sessions, please let us know what you thought and if you have ideas about future topics!


CARRA Registry Stats (as of 3/19/2021) 

  The CARRA Registry continues to grow past our  original goal of 10,000. Thank you all for the continued hard work, commitment, and patient engagement efforts.

   Total: 11,240 patients enrolled!

   + 624 Biosamples collected!





Important Dates and Deadlines