Registry Update April 21, 2017

CARRA Registry Stats
Enrollment: 2,966
7 sites have enrolled 1-5 patients
30 sites have enrolled 6-49 patients
20 sites have enrolled 50 or more patients

Top Enrolling Registry Sites:
PI Sarah Ringold/SC Luke Reichley, Seattle Children’s Hospital: 300
PI Christi Inman/SC Suzy Jones, University of Utah Hospitals: 258
PI Jennifer Weiss/SC Mary Ellen Riordan, Hackensack UMC: 186

STOP-JIA Stats:
Enrollment: 182
6 sites have enrolled 1 patient
17 sites have enrolled 2-4 patients
14 sites have enrolled 5 or more patients

Top Enrolling STOP-JIA Sites:
PI Shoghik Akoghlanian/SC Joanne Drew, Nationwide Children’s Hospital: 16
PI Sarah Ringold/SC Luke Reichley, Seattle Children’s Hospital: 15
PI Jennifer Weiss/SC Mary Ellen Riordan, Hackensack UMC: 14

FROST Stats:
Enrollment: 7
5 sites have enrolled 1 patient
1 site has enrolled 2 or more patients

FROST Site with 2 or more patients:
PI Pamela Weiss/SC Jenna Tress, Children’s Hospital of Philadelphia: 3

What Caught My Eye… and Provoked My Paranoia and Propensity to Rant

By Kenneth N. Schikler, MD
Chief, Divisions of Pediatric Rheumatology & Adolescent Medicine
University of Louisville School of Medicine
Kosair Children’s Hospital

 

In the January 2017 issue of Journal of Pediatrics, Morris et al report on their findings in 1584 Australian youth age 14 years who were part of a longitudinal pregnancy cohort between 1989 and 1991 who were evaluated using the Beighton scoring system and a range of other factors including musculoskeletal pain status in “Hypermobility and Musculoskeletal Pain in Adolescents”.

Their findings might make us reconsider what the appropriate Beighton score might be significant regarding the assignment of Generalized Joint Hypermobility (GJH), and if we might base it on gender and sexual maturity ratings (SMR). The authors also discuss how gender and SMR might alter parts of the scoring system (placing palms to floor).

The findings that provoked my paranoia and reach for my soap box though was the prevalence of GJH they found.  When a greater than or equal to “4” score was used, 60.6% of the girls and 36.7% of the boys had GJH. When a score of greater than or equal to “6” was used 26.1% of the girls and 11.5% of the boys qualified as having GJH. This prevalence is not as high as reported in some series, and higher than other reported findings, but clearly finding GJH is not rare.

Now, to my  issue; I am troubled by the number of parents and patients I see who either on their own (with the assistance of the internet) or on the basis of a diagnosis given to them by friend, neighbor or physician come in as an Ehlers-Danlos patient, based on their recognized hypermobility. They do, in fact, have GJH, but they have no abnormal skin translucency, extensibility, nor doughiness, “velvetiness”, no abnormal scars, no easy bruisability, no petechial lesions nor history of such, no scleral discoloration or periodontal disease.  They have no features other than GJH and usually features of musculoskeletal pain, G-I complaints, lightheadedness or other features that have been lumped into a Hypermobility Syndrome, that doesn’t give the impression of a DISEASE.

If we use only the prevalence numbers in this study , which are lower than the numbers in other studies, and we use the cut off of a Beighton score of 6 do we want to say that a quarter of 14 year old Australian girls and just over a tenth of 14 year old Australian boys have a “disease” diagnosis of Ehlers-Danlos and have these kids and their parents concerned about the potential problems of the forms of the Ehlers-Danlos Syndrome that have potential pathologic outcomes, and  contraindications for procedures (e.g. arteriography) and can be genetically confirmed ?  When is a relatively common physical finding that can be found as part of a disease a disease? Does every teenage female with acne have a form of polycystic ovary syndrome?

Now for the paranoia, pertinent to those of us in the United States.  If our government does away with the ACA and with it the protection on “NO PRE-EXISTING CONDITIONS” is lost, do we as pediatricians want to put diagnoses that are not completely merited on a patient’s medical record that might allow an insurer to deny them insurance or put them in a high risk pool based on the diagnosis. As my paranoia and cynicism expand, as we now have made it clear that “Obesity” in childhood and adolescence is a risk factor for adult disease, will that also be a reason for difficulty in obtaining reasonable health insurance. As we now are being made aware of the confluence of Adverse Childhood Events (ACES) and epigenetic influences on future health outcomes, are we doing out patients any favors by documenting rather than being aware of these factors ?

OK, I have completed my rant and can take a breath and get back to work.

Registry Update April 14, 2017

CARRA Registry Stats
Enrollment: 2,926
8 sites have enrolled 1-5 patients
29 sites have enrolled 6-49 patients
20 sites have enrolled 50 or more patients

Top Enrolling Registry Sites:
PI Sarah Ringold/SC Luke Reichley, Seattle Children’s Hospital: 300
PI Christi Inman/SC Suzy Jones, University of Utah Hospitals: 256
PI Jennifer Weiss/SC Mary Ellen Riordan, Hackensack UMC: 186

STOP-JIA Stats:
Enrollment: 177
5 sites have enrolled 1 patient
17 sites have enrolled 2-4 patients
14 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: 15
PI Jennifer Weiss/SC Mary Ellen Riordan, Hackensack UMC: 14

FROST Stats:
Enrollment: 6
4 sites have enrolled 1 patient
1 site has enrolled 2 or more patients

FROST Sites:
PI Pamela Weiss/SC Jenna Tress, Children’s Hospital of Philadelphia: 3
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 April 11, 2017

CARRA Registry Stats
Enrollment: 2,876
8 sites have enrolled 1-5 patients
29 sites have enrolled 6-49 patients
20 sites have enrolled 50 or more patients

Top Enrolling Registry Sites:
PI Sarah Ringold/SC Luke Reichley, Seattle Children’s Hospital: 300
PI Christi Inman/SC Suzy Jones, University of Utah Hospitals: 256
PI Jennifer Weiss/SC Mary Ellen Riordan, Hackensack UMC: 185

STOP-JIA Stats:
Enrollment: 176
5 sites have enrolled 1 patient
18 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: 15
PI Jennifer Weiss/SC Mary Ellen Riordan, Hackensack UMC: 14
PI Pamela Weiss/SC Jenna Tress, Children’s Hospital of Philadelphia: 11

FROST Stats:
Enrollment: 7

FROST Sites:
PI Pamela Weiss/SC Jenna Tress, Children’s Hospital of Philadelphia: 3
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 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.