Registry Update March 6, 2017

CARRA Registry Stats
Enrollment: 2,700
7 sites have enrolled 1-5 patients
30 sites have enrolled 6-49 patients
19 sites have enrolled 50 or more patients

Top Enrolling Registry Sites:
PI Sarah Ringold/SC Luke Reichley, Seattle Children’s Hospital: 284
PI Christi Inman/SC Suzy Jones, University of Utah Hospitals: 238
PI Jennifer Weiss/SC Mary Ellen Riordan, Hackensack UMC: 180

STOP-JIA Stats:
Enrollment: 158
7 sites have enrolled 1 patient
17 sites have enrolled 2-4 patients
13 sites have enrolled 5 or more patients

Top Enrolling STOP-JIA Sites:
PI Sarah Ringold/SC Luke Reichley, Seattle Children’s Hospital: 15
PI Shoghik Akoghlanian/SC Joanne Drew, Nationwide Children’s Hospital: 13
PI Jennifer Weiss/SC Mary Ellen Riordan, Hackensack UMC: 12
PI Pamela Weiss/SC Jenna Tress, Children’s Hospital of Philadelphia: 10

FROST Stats:
Enrollment: 5

FROST Sites:
PI Pamela Weiss/SC Jenna Tress, Children’s Hospital of Philadelphia: 2
PI Emily von Scheven/SC Bhupinder Badwal, University of California at San Francisco Medical Center: 1
PI Marilynn Punaro/SC Heather Benham, University of Texas Southwestern Medical Center Dallas: 1
PI Shoghik Akoghlanian/SC Joanne Drew, Nationwide Children’s Hospital: 1

Registry Update March 1, 2017

CARRA Registry Stats
Enrollment: 2,688
7 sites have enrolled 1-5 patients
31 sites have enrolled 6-49 patients
19 sites have enrolled 50 or more patients

Top Enrolling Registry Sites:
PI Sarah Ringold/SC Luke Reichley, Seattle Children’s Hospital: 284
PI Christi Inman/SC Suzy Jones, University of Utah Hospitals: 235
PI Jennifer Weiss/SC Mary Ellen Riordan, Hackensack UMC: 180

STOP-JIA Stats:
Enrollment: 157
7 sites have enrolled 1 patient
17 sites have enrolled 2-4 patients
13 sites have enrolled 5 or more patients

Top Enrolling STOP-JIA Sites:
PI Sarah Ringold/SC Luke Reichley, Seattle Children’s Hospital: 15
PI Shoghik Akoghlanian/SC Joanne Drew, Nationwide Children’s Hospital: 13
PI Pamela Weiss/SC Jenna Tress, Children’s Hospital of Philadelphia: 11
PI Jennifer Weiss/SC Mary Ellen Riordan, Hackensack UMC: 10

FROST Stats:
Enrollment: 5

FROST Sites:
PI Pamela Weiss/SC Jenna Tress, Children’s Hospital of Philadelphia: 2
PI Emily von Scheven/SC Bhupinder Badwal, University of California at San Francisco Medical Center: 1
PI Marilynn Punaro/SC Heather Benham, University of Texas Southwestern Medical Center Dallas: 1
PI Shoghik Akoghlanian/SC Joanne Drew, Nationwide Children’s Hospital: 1

March 2017 Update

Yukiko Kimura, MD

2017 has clearly brought many changes in our world, both internal and external to CARRA. Time will tell what the impact of political and economic forces will be on our organization, but there is one certainty: CARRA must prepare to be able to withstand the many challenges that we are likely to face in the next few years to continue and build on the progress and momentum that we have all worked to create in the last few years.

CARRA has enjoyed astounding growth and change in the last few years (http://www.the-rheumatologist.org/article/future-pediatric-rheumatology-grounded-evolution-childhood-arthritis-rheumatology-research-alliance/). Now more than ever, we must focus and align our collective energy with CARRA’s mission, core values and operating principles. This means we have to work together to build unity and consensus around our research strategies, more clearly define and standardize processes and procedures, and maintain the transparency and democratic principles upon which CARRA was founded.

We convened a leadership retreat as part of our working towards these goals in December 2016. In doing so, we identified gaps in communications and engagement and are excited to have begun work to close these gaps. We are also excited to be able to offer new research seed funding and career development opportunities, thanks in large part to our partnership with the Arthritis Foundation. These include various intramural grant programs and internship awards. We hope that many of you will take advantage of these and other opportunities (see Utrecht Summer School award, PReS travel grants, Research and Writing Group awards and Aims Page opportunity).

Most of all, we need you to be involved! Please consider writing an article for our newsletter, applying for a funding opportunity, nominating yourself or a colleague for a CARRA elected position, joining our members-only wiki and join a workgroup. There will also be an announcement soon for a new opportunity, to have dinner with Executive Committee members at the upcoming CARRA meeting in May.

Feel free to contact any of us on the Executive or Steering Committees with any suggestions for improvement. We really want to hear from you!

We look forward to seeing everyone in Houston!

Doctors Facing Borders

A couple weeks ago, our administrator received an email that sent our division into panic. The title of the email was “URGENT,” in all caps, followed by three exclamation points. It was a warning of a possible draft of a new executive order that would limit entry into the US of individuals from yet another list of countries, this one including the country of origin of our first-year fellow. The past several weeks of drama and confusion over the recent executive order for a 90-day ‘travel ban’ of citizens from seven countries in the Middle East and Africa has put into relief an important sector of medical providers in the US: international medical graduates or IMGs.

National interest in a case of a Cleveland Clinic doctor, who was barred and then allowed re-entry into the States and a handful of other similar stories, have led to discussions both in and out of medical communities about the role of IMGs in the American medical system.

The New England Journal of Medicine ran two pieces back to back, that described the vast number of international residents and faculty that contribute to patient care and biomedical research in the US, the arduous and costly path they take to get to their positions, and the impact that barring these people from entry to the US might have on the future of American medicine. It turns out that last year, remarkably greater than 50% of matched internal medicine residents were IMGs.

Data from the American Board of Pediatrics shows that 22% of the pediatric residents who took the general boards were IMGs. IMGs are more likely to go into pediatric subspecialties than American medical graduates, and 41% of physicians that sat for the pediatric rheumatology boards were IMGs.

The American College of Rheumatology’s 2015 Workforce Report paints a similar picture: 43% of trainees in pediatric rheumatology are IMGs. What also bears mentioning, is that they project that by 2030 we will need twice as many pediatric rheumatologists in the US to cover the demand. Almost half (18 out of 40) of the fellowship positions in pediatric rheumatology went unmatched in 2015, with only 27 applicants going into the match. In a survey from the ACR Fellows-in-Training committee, 76% of IMG pediatric rheumatology fellows planned to continue to practice in the US.

For those trainees who eventually return to their countries of origin, in some cases the value of their contribution may be arguably greater. If our goal is to produce practitioners for children across the globe with rheumatic diseases, ponder for a second that as of 2014 there were only 5 pediatric rheumatologists in South Africa and fewer than 10 in all of Sub-Saharan Africa.

Regardless of your feelings about how the borders of the United States should be controlled, the inescapable fact is that these doctors play a vital role in serving US patients, particularly in fields such as pediatric rheumatology, where shortages exist and are only projected to get worse. And regardless of whether this or any new revised executive order on immigration (reportedly in the works) will impact IMGs to the US, I think it is worthwhile to start a dialogue about how, as a community, we will press forward with our mission of collaborative research and care and our vision of “a world free of limitations from pediatric rheumatic diseases” in a world where borders may be more difficult to traverse.

Share your thoughts about What Caught Our Eye in the comments section!

CARRA Registry Internship

Applications due March 24, 2017

Established through funds at the Childhood Arthritis and Rheumatology Research Alliance (CARRA) Inc., the CARRA Registry Internship will require 25% effort for one year. The CARRA Registry supports data collection on patients with pediatric-onset rheumatic diseases. This internship is designed to immerse the applicant in the operational, leadership and scientific aspects of the new multicenter observational registry which will be used to answer pressing questions about pediatric rheumatic diseases, including drug safety. This is a unique opportunity for the intern to interact intensively with the CARRA Registry leadership team; to learn skills and gain knowledge that will enrich subsequent pediatric rheumatology research and practice.

Eligibility:

Applicants must have completed a pediatric rheumatology fellowship and be employed as a pediatric rheumatologist in the United States or Canada. Fellows graduating by June 30, 2017 and Early Investigators are encouraged to apply.

Internship Selection:

The CARRA Registry Executive Committee will review all applications, interview top candidates, select the CARRA Registry Intern and notify all applicants of the outcome prior to the CARRA annual meeting (May 15-17, 2017).

Internship Term:

This is a one-year internship that follows the academic cycle (begins July 1, 2017 and ends June 30, 2018). The internship may be eligible for a one year renewal, depending on availability of funds and/or productivity.

Award:

The chosen intern will receive 25% salary support and associated fringe (up to 8% F&A supplement on salary support only, maximum salary is capped at $200,000).

Requirements and Responsibilities:

The intern will:

  • be mentored primarily by the CARRA Registry Scientific Director (Tim Beukelman) and secondarily by the Registry Co-Directors (Yuki Kimura and Laura Schanberg),
  • work with the CARRA Senior Director of Research Operations to learn site management and registry study finances,
  • actively participate in a weekly and monthly conference call, and occasional colloquia or program workshops,
  • be responsible for preparing manuscripts, abstracts, and delivering presentations in support of the CARRA Registry as directed by the Registry team and based on the intern’s own interests,
  • be required to acknowledge their internship in any publications that result from work related to the registry done during their tenure.

Application Process:

Applications must be received by March 24, 2017 and consist of the following materials:

  1. NIH Biosketch (maximum limit of 4 pages)
  2. Research Statement: One page (single-spaced) statement describing what you hope to contribute and to gain from this experience, as well as how it would fit into your long-term career goals.
  3. Institutional Letter of Support: Letter signed by division chief or chair stating that there will be 25% protected effort for these activities.
  4. Letter of Recommendation: Signed letter of recommendation from a CARRA member other than the division chief supporting your candidacy.

Application materials must be submitted online via the following link:

https://form.jotform.com/carragroup/carra-registry-internship-app

 

CARRA 2017 Elections

We are pleased to announce the 2017 Call for Nominations. This year, there are several open positions that provide an excellent opportunity to be more involved with CARRA while cultivating the benefits of being part of our thriving organization and helping shape the future of the organization.

PLEASE NOTE: The elections for the Steering Committee Chair open positions will be held prior to the elections for the Publications Committee Chair and Steering Committee Vice Chair open positions.

Positions Open for Nomination

Nominations for these positions are due February 22, with candidate applications due March 8:

Steering Committee:

  • Early Investigator Chair
  • RAAC Chair
  • SVRD Chair
  • TRTC Chair

Nominations for these positions are due March 31, with candidate applications due April 12:

Steering Committee:

  • RAAC Vice Chair
  • SVRD Vice Chair
  • TRTC Vice Chair

Publications Committee:

  • Publications Committee Chair

Descriptions for each of these positions and can be found on the CARRA website here.

How to Submit a Nomination

If you are interested in a position or know someone who is interested, submit your nominations using this form:

https://form.jotform.com/carragroup/CARRA2017ElectionNominations

Nomination Deadlines

  • Wednesday, February 22 for Steering Committee Chair positions.
  • Wednesday, March 31 for Steering Committee Vice Chair and Publications Committee.

Click here for more information about the 2017 elections.

Please contact CARRA Executive Director, Kelly Mieszkalski ([email protected] or 919.668.7531) with any questions.

Registry Update February 3, 2017

CARRA Registry Stats
Enrollment: 2,560
8 sites have enrolled 1-5 patients
33 sites have enrolled 6-49 patients
16 sites have enrolled 50 or more patients

Top Enrolling Registry Sites:
PI Sarah Ringold/SC Luke Reichley, Seattle Children’s Hospital: 274
PI Christi Inman/SC Suzy Jones, University of Utah Hospitals: 217
PI Jennifer Weiss/SC Mary Ellen Riordan, Hackensack UMC: 177

STOP-JIA Stats:
Enrollment: 138
8 sites have enrolled 1 patient
19 sites have enrolled 2-4 patients
10 sites have enrolled 5 or more patients

Top Enrolling STOP-JIA Sites:
PI Sarah Ringold/SC Luke Reichley, Seattle Children’s Hospital: 15
PI Pamela Weiss/SC Jenna Tress, Children’s Hospital of Philadelphia: 9
PI Jennifer Weiss/SC Mary Ellen Riordan, Hackensack UMC: 9
PI Shoghik Akoghlanian/SC Joanne Drew, Nationwide Children’s Hospital: 9

FROST Stats:
Enrollment: 4

FROST Sites:
PI Pamela Weiss/SC Jenna Tress, Children’s Hospital of Philadelphia: 2
PI Emily von Scheven/SC Bhupinder Badwal, University of California at San Francisco Medical Center: 1
PI Marilynn Punaro/SC Heather Benham, University of Texas Southwestern Medical Center Dallas: 1

The Utrecht Summer School Program Sponsorship Program

Call for Applications
Utrecht Summer School Program Sponsorship

CARRA is pleased to announce an exciting opportunity for 2 early investigators to receive sponsorship to participate in the Utrecht summer school program course entitled “Why Translational Medicine Fails – And What to do About it.” Fellows with established translational research interests will also be considered for this opportunity. The course will take place July 3 – July 7, 2017 in Utrecht, Netherlands. The sponsorship will cover the €750 (Euro) tuition (which includes housing and lunches), round trip coach airfare and $250 for incidental expenses.

This course, tackles the intrinsic difficulties of effective translational medicine in rare and orphan diseases and is meant for early stage researchers with an interest in this field. A full course description can be found on Utrecht’s Summer School program’s website. This course is open to participants from a wide range of disciplines and will be led by a pediatric rheumatologist.

Eligibility:

  • Currently an early investigator (<7 years post-fellowship; no age maximum) or fellow with established translational research interests and experience
  • Current CARRA member (early investigators must be current with paid 2017 membership dues)

Submission Requirements:

  • Your CV
  • A personal statement: This should consist of less than one page describing yourself, your career goals, any ongoing translational projects and a statement indicating how you would benefit from this opportunity.
  • Letter of support from current division chief or program director.

How to Apply:
Interested early investigators and fellows should complete the application form and submit requested materials by March 8. Incomplete applications will not be considered.

APPLY HERE: https://form.jotform.com/carragroup/2017UtrechtSponsorshipProgramApp

Deadline: March 8, 2017

If you have any questions about the program or applying for sponsorship, please contact Kelly Mieszkalski ([email protected]).

 

You’re Asking ME??!?

Harry L. Gewanter, MD, FAAP, FACR

By Harry L. Gewanter, MD, FAAP, FACR

“Isn’t there something natural or a diet we can use instead of these poisons?”

This is a question all of us hear on a regular basis. And while we may believe we are recommending treatments utilizing the best evidence, that may not be the perception of some families. It is understandable that the parental desire to protect their child results in appropriate anxiety and fear over what they may believe to be overaggressive, or even experimental, treatment regimens. Similarly, anecdotes and subconscious beliefs may drive decision-making in these stressful situations more than evidence.

Our children do not respond well to our answers of “Because I told you so” and neither do our patients and their families. On the other hand, it is also difficult to answer beliefs just with facts. Like our offspring, patients and their families must often “discover” what we already know on their own. It is therefore important to have an understanding of their perspectives and provide valid information in an approachable format.

One problem with answering their questions is that there may not be sufficient (or any) comparable evidence to cite about the specific complementary, alternative or integrative intervention the families may be interested in trying. Responding with “more sleep and exercise are excellent natural interventions” or “work on reducing your stress”, while true, just ain’t gonna cut it. And essentially every article about both allopathic as well as non-allopathic interventions ends with the statement: “Ask your physician.”

So … what is “your physician” to do?

What caught my eye were recent posts by the NIH’s National Center on Complementary and Integrative Health (NCCIH). They have been working on trying to develop and/or report better evidence on integrative practices since their inception in 1998. While this will not necessarily provide you with the data you may want, it is an excellent place for valid information for both you and your patients. They have a clinical digest that they post monthly and the reports on “Musculoskeletal Inflammation and Natural Products” and “Complementary Approaches to Chronic Pain” are particularly relevant to our field. One can also subscribe to their Clinical Digest and other informative items, join or view their webcasts and utilize their site as a place families can go for more information. And, by the way, they also fund research projects.

These two reports can give you at least some evidence and suggestions that you can give to your families and you can direct them to the NCCIH website. In addition, MedlinePlus has material (http://medlineplus.gov) as does the UK’s National Health Service (http://www.nhs.uk/Livewell/complementary-alternative-medicine/Pages/complementary-and-alternative-medicine.aspx) and many US medical centers now have Integrative Medicine programs (www.imconsortium.org). The American Academy of Pediatrics also has a Section on Integrative Medicine (https://www.aap.org/en-us/about-the-aap/Committees-Councils-Sections/Section-on-Integrative-Medicine/Pages/default.aspx ) and its webpage within the AAP and/or its members can be a useful resource. For example, there is a handout for families (https://patiented.solutions.aap.org/handout.aspx?gbosid=156748) that can be personalized for your practice.

Beyond sending your families to the web for more information, here are a few things you can point out (beyond the obvious fact that there is even less data in children than adults):

  • Please tell me about everything your child/you are taking! We need to know so we can be sure we don’t think there is a positive or negative issue is from the wrong intervention(s).
  • There is good evidence that mind-body techniques help reduce pain and improve quality of life for people with rheumatic diseases and other chronic illnesses.
  • There is good evidence that sleep and activity is good for everyone. (Ideally everyone should try to “Eat, sleep & sweat” daily.)
  • Acupuncture has been shown to be effective in a number of musculoskeletal conditions, especially painful ones, but we are still learning about its impact on inflammatory conditions.
  • There is developing evidence on the effect of various diets on inflammatory conditions, but it is early and we have much to learn.
  • We are learning about the interactions between natural substances and our current therapies and there are situations where the combination can be helpful or cause problems.
  • While many of these interventions are helpful, there is not yet sufficient information to say they work as well in reducing the inflammation and preventing the damage as what I am recommending.

No single medical philosophy has all the answers and we must remain open to new information and insights. Not too long ago we did not think much of an infectious cause for ulcers or that our gut flora could influence health. Who knows what we pooh-pooh now may be beneficial in the future.

Share your thoughts about What Caught Our Eye in the comments section!

 

Registry Update January 27, 2017

CARRA Registry Stats
Enrollment: 2,499
7 sites have enrolled 1-5 patients
34 sites have enrolled 6-49 patients
15 sites have enrolled 50 or more patients

Top Enrolling Registry Sites:
PI Sarah Ringold/SC Luke Reichley, Seattle Children’s Hospital: 271
PI Christi Inman/SC Suzy Jones, University of Utah Hospitals: 208
PI Jennifer Weiss/SC Mary Ellen Riordan, Hackensack UMC: 177

STOP-JIA Stats:
Enrollment: 131
9 sites have enrolled 1 patient
19 sites have enrolled 2-4 patients
9 sites have enrolled 5 or more patients

Top Enrolling STOP-JIA Sites:
PI Sarah Ringold/SC Luke Reichley, Seattle Children’s Hospital: 14
PI Pamela Weiss/SC Jenna Tress, Children’s Hospital of Philadelphia: 10
PI Jennifer Weiss/SC Mary Ellen Riordan, Hackensack UMC: 9

FROST Stats:
Enrollment: 4

FROST Sites:
PI Pamela Weiss/SC Jenna Tress, Children’s Hospital of Philadelphia: 2
PI Emily von Scheven/SC Bhupinder Badwal, University of California at San Francisco Medical Center: 1
PI Marilynn Punaro/SC Heather Benham, University of Texas Southwestern Medical Center Dallas: 1