CARRA is Growing!

As of June 2017, there are 555 members and 119 sites in the United States and Canada.

The below chart shows the growth of CARRA from 2003 to 2016:

CARRA's Growth Chart

Registry Update June 5, 2017

CARRA Registry Stats
Enrollment: 3,162
9 sites have enrolled 1-5 patients
27 sites have enrolled 6-49 patients
22 sites have enrolled 50 or more patients

Top Enrolling Registry Sites:
PI Sarah Ringold/SC Luke Reichley, Seattle Children’s Hospital: 305
PI Christi Inman/SC Suzy Jones, University of Utah Hospitals: 288
PI Jennifer Weiss/SC Mary Ellen Riordan, Hackensack UMC: 187

STOP-JIA Stats:
Enrollment: 205
5 sites have enrolled 1 patient
15 sites have enrolled 2-4 patients
18 sites have enrolled 5 or more patients

Top Enrolling STOP-JIA Sites:
PI Shoghik Akoghlanian/SC Joanne Drew, Nationwide Children’s Hospital: 19
PI Sarah Ringold/SC Luke Reichley, Seattle Children’s Hospital: 16
PI Jennifer Weiss/SC Mary Ellen Riordan, Hackensack UMC: 14

FROST Stats:
Enrollment: 9
4 sites have enrolled 1 patient
2 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
PI Emily von Scheven/SC Bhupinder Badwal, University of California at San Francisco Medical Center: 2

 

Adverse Childhood Experiences and Autoimmune Disease — Is There a Link?

By Jim Jarvis, MD
Dept of Pediatrics and Genetics, Genomics, & Bioinformatics Program,
University at Buffalo Jacobs School of Medicine & Biomedical Sciences

Have you ever wondered, even if just a little bit, why it is that for every complex genetic trait, whether it’s coronary artery disease, type 2 diabetes, or preterm labor, prevalence rates are always higher in economically challenged, socially marginalized, and historically traumatized populations?  I have been pondering this question for more than 15 years.  As a Native American person, I can tell you that our communities are pretty tired of being told, “It’s because you have bad genes,” and we’re not buying that answer anyway.

Last month, I was part of a small group invited by our Association of American Indian Physicians to assist in developing culturally appropriate ways to inform tribal governments and physicians caring for American/Indian Alaskan Native (AI/AN) people of the results and implications of the Adverse Childhood Experiences  (ACE) study.  During our discussions, I was asked whether there was any known link between ACEs and rheumatic diseases, a reasonable question since both rheumatoid arthritis and systemic lupus show prevalence rates that are 5-10x higher in our AI/AN communities than in the broader population.  Well, it turns out that there is a link.

The study, Cumulative childhood stress and autoimmune diseases in adults (Psychosom Med 2009; 71: 243-250.  doi:  10.1097/PSY.0b013e3181907888) is actually 8 years old, and I’m surprised I hadn’t noticed it sooner.  In this paper, the authors queried ACE data from  >15,000 adults in the San Diego Kaiser Health Foundation cohort who were part of Dr. Vince Fellitti’s original study (which, in case you’ve been residing on Mars for the past decade, links adult health outcomes to specific traumatic childhood experiences).  Their outcome variable was hospitalization for any of 21 different autoimmune/rheumatic diseases, which, of course, would under-detect an effect of ACEs on an illness like rheumatoid arthritis, which is seldom a primary cause for hospitalization. Compared to people with ACE scores of 0, people with ACE scores of > 2 showed a 100% increased risk for hospitalizations related to rheumatic diseases. Given that ACE scores of > 5 are twice as common in our AI/AN communities than in the broader population, no one should be surprised that we also have high rates of rheumatic disease.

The important question is whether the association is actually causal.  As we learn more about the effects of trauma and toxic stress on the epigenomes of cells of the central nervous system and the immune system, a causal connection becomes quite plausible.  Furthermore, we know from animal data that epigenetic changes associated with trauma responses can be transmitted across the generations (see the fascinating paper in Nature Neurosciences 2014; doi:10.1038/nn.3594).  To AI/AN people, the idea that the multiple generations in which we have faced cultural loss, poverty, racism, violence, and social marginalization has led to the observed high rates of rheumatic diseases rings true. It certainly provides a much better explanation than “you have bad genes.”

The good news, both for AI/AN people and for rheumatologists, is that the epigenome is wonderfully plastic.  Indeed, we have shown in my laboratory that one of the primary things that successful therapy for JIA does is reorganize the epigenomes of multiple different cells types.  Furthermore, multiple studies have demonstrated effective interventions that can attenuate the effects of chronic, intergenerational trauma (see Science 2014; DOI: 10.1126/1248429).

So what’s the take-home in all this?  For me, these studies are a reminder that, even though we are pediatric subspecialists, we are still pediatricians.  We are predisposed by both inclination and training to understand the social determinants of health.  Could there be a link between ACEs and JIA?  Could the traumas of our patients’ parents, grandparents, or great grandparents be manifesting themselves in the children we care for?  In our Mohawk culture, we speak of the seven generations to come who will be affected by what we do and say, or by what others do and say to us. It is my fondest hope that somewhere in CARRA, right now, there’s a young fellow or junior faculty member willing to ask the kinds of questions that emerge from the ACE study and its applicability to our own subspecialty. The answers may affect the next seven generations.

 

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!