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CARRA Newsletter-March 2018 Issue 2

President's Report

Yukiko Kimura, MD
Hackensack University Medical Center

It’s hard to believe my term as President of CARRA is about to come a close. As of July 1, I will be going on to the next phase of the CARRA leadership rotation as the Past President, with Rob Fuhlbrigge stepping in as the new President and Emily von Scheven as Vice President. The new Executive Committee will be rounded out by newly elected Bob Colbert as the new Treasurer and Finance Chair (welcome!), along with our capable Executive Director, Kelly Mieszkalski. Many thanks to Laura Schanberg for her 8 years’ service on the Executive Committee as well as innumerable contributions to our organization, although her work in CARRA is not completed: her vital involvement in many important CARRA projects will continue unabated.

The fact that the last two years have flown by is a testament to the rapid-fire pace and growth of new and exciting developments and projects for CARRA. Our Annual Meeting, which is right around the corner (April 11-15 in Denver), promises to be the best ever, with terrific speakers, panelists, numerous workgroups and increasing numbers of patient and family attendees as well as other stakeholders.

In this Issue...

CARRA is extremely thankful for our continued partnership with the Arthritis Foundation, without which much of what we have been able to accomplish would not have been possible. Here are just a few highlights of what CARRA has accomplished in the past two years:

The CARRA Registry

  • Successful enrollment of over 5,000 patients, including lupus and dermatomyositis
  • Launch of automated CARRA site feedback reports
  • Start of our first registration trial (anaSTILLS study*)
  • Launch of the CARRA-AF Registry Research Coordinator Pilot Support Program
  • Biospecimen collection on STOP-JIA and FROST participants

The progress we’ve made will move us closer to our goal of being able to understand how children with rheumatic diseases are being treated, the safety and effectiveness of the medications being used to treat children, and very importantly, allowing all patients with rheumatic diseases the opportunity to participate in research.

CARRA Consensus Treatment Plans

  • Successful enrollment anticipated by July of STOP-JIA (the comparative effectiveness study [CER] of the poly JIA CTPs) and launch of the CER study of the systemic JIA CTPs (FROST)
  • Development of CTP guidelines and advisory group (led by Emily von Scheven)
  • Publication of CARRA CTP concept paper

The CTPs are a unique concept developed by CARRA that will foster standardization of treatment as well as the ability to compare the treatments being used to treat pediatric rheumatic diseases

Patient Engagement

  • Embedding of patient engagement and participation in CARRA
  • Launch of PARTNERS registration to patients and families to participate in research
  • Launch of the Rheumatology Learning Health System project to co-produce care with patients
  • FDA Patient-Focused Drug Development program being planned with AF for 8/18

Our patients and families are the reason and the guiding light for our research, and should be part of the research process from start to finish

CARRA Intramural Grants and Awards

  • Expansion of the CARRA-AF Intramural Grants and Awards Programs* including:
    • Increased number of grant opportunities and total amount of funding
    • Increased Early Investigator and Fellow programs
    • Launch of the CARRA Registry and Bioinformatics Internships
  • Implementation of the CARRA Scientific Review Committee process

Developing ideas and supporting workgroup activities as well as our Early Investigators is critical to ensure a robust pipeline of future pediatric rheumatology researchers and solidifying CARRA’s

International Collaboration

  • More intensive and meaningful collaboration with our international colleagues, including PReS and the UK Collaborative Study Group
  • Linking with research efforts of our Canadian colleagues, such as UCAN CAN DU

Pediatric rheumatologists everywhere need to work together and collaborate in order to make faster and more meaningful progress. We need to learn together and from each other.

If all this wasn’t enough to do, CARRA has been undergoing streamlining of our organizational governance structure, strengthening our ethics oversight, increasing and improving our administrative support, and engaging in developing our strategic framework for the next five years.

We could not succeed without the work and support of our entire organization and many individuals, including the Executive Committee, the Steering Committee, the Board of Directors, our superb administrative team, the support of the Arthritis Foundation, and the hard work and dedication of all the CARRA leaders and members over the past 16 years since CARRA’s inception. Thank you for allowing me to serve as President of this growing and vital organization for the past two years. I am excited at the prospect of being able to witness and be a part of CARRA’s continued growth and transformation in the years to come.

Yukiko Kimura, MD

 

Harry Saal, PhD is CARRA’s Newest Board Member!

Dr. Harry J. Saal was the founder and CEO of Network General Corporation, the first company wholly dedicated to the area of network diagnostics and the creator of the eponymous "Sniffer" network analyzer. In 2002, Dr. Saal was chosen by the US Department of Justice to lead the Technical Committee charged with monitoring and enforcing the Microsoft Antitrust case. He served as Chairman of the Committee through the May 2011 expiration of the Judgment.

Most recently, he is the Chair of Retrotope, Inc. a pharmaceutical startup, based here in Silicon Valley. Dr. Saal is confident that the compounds under development stand an excellent chance of revolutionizing the treatment and prevention of a wide variety of untreatable neurodegenerative diseases of aging.

Full Bio


Welcome to CARRA’s Newest Staff Member: Miranda Wenzlaff!

Miranda Wenzlaff
CARRA Director of Research Operations
[email protected]

CARRA is excited to announce Miranda Wenzlaff, MS, CCRP, as our new Director of Research Operations! Prior to CARRA, Miranda was responsible for coordinating and overseeing more than 80 clinical research studies for the department of Obstetrics & Gynecology at the Medical College of Wisconsin (MCW). She maintained sole study oversight for all department faculty, fellow, and resident research, and assisted with staff training and onboarding as well as mentoring residents and medical students on their research. She brings a wealth and versatility of research knowledge stemming from study start-up to closure, and has managed multi-center studies, clinical trials, investigator-initiated trials, education and qualitative research, community research initiatives, registries, biorepositories, and data banks. She has implemented quality improvement programs in a medical teaching hospital, and has expertise in study management, data management, SOP development, and regulatory oversight and compliance.

Miranda graduated from the University of Wisconsin-Green Bay with a Bachelor of Science degree, where she completed a double major in both Psychology and Human Development. She then went on to complete her Master of Science degree in Experimental Psychology at the University of Wisconsin-Oshkosh, where she was inducted into the National Society of Leadership and Success and appointed as the Graduate Program Ambassador.

Initially, Miranda will be working with CARRA leadership on the CARRA Registry and related studies, the CARRA Biorepository, and all new Registry-related projects. She will be responsible for management of CARRA’s Data and Sample Share process and the CARRA-AF Registry Coordinator Pilot Support program. DCRI will remain the primary contact for Registry site investigators and coordinators for all study protocol and data related questions.


Annual Meeting Update

The 2018 CARRA Annual Scientific Meeting is just around the corner! Registration is now closed and final preparations are underway. If you are joining us in Denver, we will be sending an email soon with more information about:

  • AM18 Mobile App
  • Final Program
  • Travel Reimbursement Policy
  • Local Weather
  • Exhibitors
  • Sponsors
  • And More!

We look forward to seeing everyone in Denver!

 

 

Thank you to our Annual Meeting Sponsors!

Diamond Sponsors

Gold Sponsors


Steering Committee Vice Chair Elections – Voting is Now Open!

Voting is now open for the second round of elections. Only current voting members (pediatric rheumatologist, sponsored voting, and emeritus members) are eligible to participate. Ballots were sent to the email address on file on 3/26/18.

Elections for the open Steering Committee Vice Chair Positions will be open until April 5 (5pm PT). See below for the list of open positions along with the candidates for each position. Click on each position title to view the scope of work. Click on the candidates name to view his/her statement and link to his/her bio

Early Investigator Vice Chair
Kaveh Ardalan, MD, MS
Fatima Barbar-Smiley, MD, MPH
Rebecca Trachtman, MD

JDM Vice Chair
Susan Kim, MD, MMSc

Pain Vice Chair
Jennifer Weiss, MD

SLE Vice Chair
Andrea Knight, MD, MSCE
Laura B. Lewandowski, MD
Natasha Ruth, MD, MS
Mary Beth Son, MD

Small Centers Vice Chair
Matthew Hollander, MD, MHA
Mary Toth, MD

CARRA voting members must participate in all elections to remain a member in good standing so remember to vote by April 5! If you are a current voting member and did not receive your electronic ballot, please contact Brian Mondragon Jones ([email protected]).


2018 PReS Travel Award-Announcement

Applications due April 20, 2018

CARRA is funding up to 2 travel grants for Early Investigator to attend the Pediatric Rheumatology European Society (PReS) annual meeting and PReS Young Investigator Meeting in Lisbon, Portugal from September 5 through September 8.  This opportunity is open to all CARRA Fellow members and Early Investigators (finished fellowship in 2011 or later). This is an outstanding meeting and a great chance to present your work and network.

The goals of this are to

  1. Create collaboration between the CARRA Early Investigator group and the PReS Young Investigator group
  2. Give CARRA members an opportunity to give a scientific presentation (oral or poster) at an international meeting
  3. Allow CARRA members to attend the very highly-regarded PReS Young Investigator Meeting (on the day before the PReS meeting starts): http://www.pres.eu/pres2018/young-investigators.html
  4. Provide an opportunity for CARRA Early Investigators to network and collaborate with international colleagues

View Full Announcement


Registry Announcements

Enrollment Update (as of 3/16/18)

Remember to make every effort to enter data for the 12 month visit for STOP-JIA patients (this is the primary endpoint visit)!


CARRA-AF Registry Coordinator Pilot Sites Announced!

Congratulations to the following CARRA Registry sites and study principal investigators who were recently selected by CARRA and the Arthritis Foundation to participate in the inaugural CARRA-AF Registry Coordinator Pilot Support Program:

  • Children's National Medical Center, Washington, D.C. (Larry Jung, Tova Ronis)
  • Indiana University School of Medicine, Indianapolis, IN (Kathleen O’Neil)
  • Randall Children's Hospital at Legacy Emanuel, Portland, OR (Dan Kingsbury)
  • Baylor College of Medicine, Houston, TX (Eyal Muscal)
  • St. Louis Children’s Hospital, St. Louis, MO (Kevin Baszis)
  • University of Iowa Hospital and Clinics, Iowa City, IA (Polly Ferguson)
  • Levine Children's Hospital/Carolinas Medical Center, Charlotte, NC (Tom Griffin)
  • University of Florida/Shand’s Children's Hospital, Gainsville, FL (Ben Thatayatikom)

Each site will receive $25K plus 8% indirects to support the salary of a dedicated CARRA Registry research coordinator!  Thank you to the Arthritis Foundation for providing the funds to our sites for this important program!


Announcements and RFAs

Register Now for 2018 Update on Juvenile Myositis Care and Research

Cure JM Foundation and George Washington University's Myositis Center Division of Rheumatology are offering a free CME activity: 2018 Update on Juvenile Myositis Care and Research on Friday, June 29, 2018 from 7:30am-4:30pm at George Washington University's School of Medicine & Health Sciences in Washington D.C.

This Medical Conference is open to all physicians and members of the medical community with a special focus on those in pediatrics, rheumatology, dermatology, and neurology.

Learning Objectives:

  1. Identify best practices in diagnosing and treating patients with Juvenile Myositis (JM).
  2. Apply latest developments in myositis research to clinical care.
  3. Examine specialized management issues relevant to JM patients.
  4. Discuss JM case studies to make treatment plans to optimize care.

To learn more and register for this free CME activity, please visit:  www.curejm.org/medicalconferencePre-Registration is required.

Questions? Please contact Cure JM’s Executive Director, James Minow ([email protected]) or Cure JM President, Mitali Dave ([email protected]).


LUPUS Foundation RFAs

The purpose of the Gary S. Gilkeson Career Development Award (CDA) is to facilitate the professional development of second or third year rheumatology, nephrology and dermatology fellows in the U.S. and Canada, interested in lupus research towards a career as an independent, clinician-scientist at an academic, medical, or research institution, with a research program having considerable focus on the investigation of basic, clinical, translational, behavioral or epidemiological lupus research.  The Gina M. Finzi Student Summer Fellowship Award (Finzi) seeks to cultivate an interest in lupus research among young scientists by funding studies conducted under the supervision of an established lupus investigator. Applications for the CDA and Finzi are due on April 9, 2018.

Please visit the LFA’s RFA page for more information.


Walk to Cure Arthritis
For 70 years, in ONE community after another across the country, The Arthritis Foundation has taken colossal steps to conquer this crippling disease. Our Walk to Cure Arthritis is the largest arthritis gathering in the world, celebrating our warriors, raising funds for research, resources and a cure. Much more than just a walk event, it’s something even bigger than arthritis itself. Please join us. Find an event near you at walktocurearthritis.org