Registry Update August 2016

Registry Stats
Enrollment: 1,769
10 sites have enrolled 1-5 patients
33 sites have enrolled 6-49 patients
9 sites have enrolled 50 or more patients

Top Registry Sites:
PI Sarah Ringold/SC Luke Reichley, Seattle Children’s Hospital: 214
PI Christi Inman/SC Suzy Jones, University of Utah Hospitals: 158
PI Jennifer Weiss/SC Mary Ellen Riordan, Hackensack UMC: 154

STOP-JIA
STOP-JIA Stats:
Enrollment: 71
7 sites have enrolled 1 patient
11 sites have enrolled 2-4 patients
5 sites have enrolled 5 or more patients

Leading STOP-JIA enrollers
PI Sarah Ringold/SC Luke Reichley, Seattle Children’s Hospital: 9
PI Jennifer Weiss/SC Mary Ellen Riordan, Hackensack UMC: 7
PI Pam Weiss/SC Jenna Tress, CHOP: 7

Registry Update July 2016

Registry Stats
Enrollment: 1,502
11 sites have enrolled 1-5 patients
30 sites have enrolled 6-49 patients
7 sites have enrolled 50 or more patients

Top Registry Sites:
PI Sarah Ringold/SC Luke Reichley, Seattle Children’s Hospital: 182
PI Christi Inman/SC Suzy Jones, University of Utah Hospitals: 150
PI Jennifer Weiss/SC Mary Ellen Riordan, Hackensack UMC: 142

STOP-JIA
STOP-JIA Stats:
Enrollment: 48
7 sites have enrolled 1 patient
7 sites have enrolled 2-4 patients
3 sites have enrolled 5 or more patients

Leading STOP-JIA enrollers
PI Sarah Ringold/SC Luke Reichley, Seattle Children’s Hospital: 9
PI Mara Becker/SC Chelsey Smith, Children’s Mercy Hospital: 5
PI Jennifer Weiss/SC Mary Ellen Riordan, Hackensack UMC: 5

What is our role in tackling mental health disparities in kids with rheumatologic diseases?

What is our role in tackling mental health disparities in kids with rheumatologic diseases?

By Tamar Rubinstein, MD, MS

June 3, 2016

Tamar Rubinstein, MD MS

Tamar Rubinstein, MD MS

A month ago, the CDC came out with a report about a recent increase in suicides in the United States. The most disturbing trend was an increase of 200% among girls age 10-14 from 1999 to 2014. This statistic was quickly picked up by news outlets across the country. I heard it on NPR on my morning drive to work.

But what about our kids? Are we sufficiently treating our patients in pediatric rheumatology for depression and anxiety? Are we sufficiently identifying them in the first place? In a study just released inThe Journal of Rheumatology, the authors (Andrea Knight, Ming Xie, and David S. Mandell) examine some of our most vulnerable patients and find that certain groups may be falling through the cracks.  (Read more…)

The authors analyzed Medicaid claim data from 2005-2007 to estimate the prevalence of depression and anxiety, and the use of antidepressants and anxiolytics, among white, African-American, Latino, and other 10-18-year-olds with lupus. Overall, 19% of lupus patients in this population were identified as having depression, compared to 4% of Medicaid patients in the same age groups. This is striking but comes as no surprise given the many reasons we think kids with lupus are at greater risk for depression, including reactive depression, medication effects, or possible CNS disease.

What is noteworthy is that African-Americans have lower rates of depression and anxiety diagnoses and lower rates of prescribed antidepressants and anxiolytics. Even after taking into account sex, age, and other relevant covariates, the odds of African-Americans having a diagnosis of depression were half that of whites. Although one could argue that this group is at lower risk for depression and anxiety, Andrea Knight’s previous work and what we know about the general pediatric population indicate the opposite.

The disparities that Knight et al. uncovered may have complex etiologies. In Congresswoman Robin Kelly’s 2015 “Kelly Report” on health disparities in the US, both lupus and mental health are explored. The report on mental health makes reference to a “double stigma” for minority patients with mental illness. Such a stigma may act as a barrier for minorities in discussing emotional health with providers and seeking treatment. Several strategies are proposed to overcome stigma and disparities, among them building partnerships between PCPs and mental health providers.

We’ve certainly seen the impact of bringing psychologists to primary care pediatric clinics at my home institution in the Bronx. But my 19 year old patient with lupus, CNS disease, nephritis, and complaints of anxiety has not stepped foot in her pediatrician’s office for 3 years. Anecdotally, it seems to me that the more organs involved and the more complex their care, the less likely my patient is to know their general pediatrician’s name. Once I opened up a lupus patient’s chart and saw that my name had been replaced on the banner where the PCP’s should have been. Where are our lupus,  vasculitis, arthritis, chronic pain, and fibromyalgia patients’ medical homes?

Unlike our cardiologist, nephrologist, neurologist, or gastroenterologist colleagues, we take care of disease processes more than organ systems. These diseases often place us as coordinators of care among other subspecialists. How much we should take on a generalist role is likely a divisive question, separating our community into those of us who believe that in doing so we overstep the boundaries of our training and our expertise and those of us who feel we must take a more holistic view of our patients and their diseases. Both points of view are valid and not mutually exclusive.

The answer may be more effectively promoting our patients relationships with their primary care providers and advocating that mental health services be appropriately provided for our vulnerable populations. Or taking on the role of screening for mental illness and connecting our patients to service ourselves. Regardless, it appears there is still work to be done.

Recent President’s Updates

You’re Asking ME??!?

"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....

read more

Does Depression Cause Arthritis In Teenagers?

Mental illness is certainly an important aspect of many of our patients’ struggles, and I hope I’ve made the case earlier that it’s something pediatric rheumatologists should be paying attention to… There is a lot of good literature to show that patients with chronic...

read more

What Caught My Eye

It is not unusual for pediatric rheumatologists to be asked to see a child with persistent fever, without arthritis, who may or may not have had rash. Usually by the time the rheumatologist is called, the child has often been treated with antibiotics, and bacterial cultures have been done and were negative, and serologic or PCR studies for tick related illnesses and other infectious etiologies are in process or negative. Viral studies are done, and how specific/ disease related is the finding of a positive recovery of a respiratory pathogen from a nasal swab?

read more

Some breast milk a day keeps the IVIG away?

Perhaps you missed the New York Times article published in October 2015,  “Overselling Breast Feeding” or the firestorm that erupted afterwards. I didn’t. I was up nursing my newborn on our first week home and reading resultant Facebook posts, emails, and even an...

read more

Are we doing enough sharing with our caring?

By Jay Mehta, MD

As the parent of a 4-year-old, and the resident of a major metropolitan area, the word “share” (and its various constructions) is a daily part of my lexicon. I’m constantly reminding my daughter the importance of “sharing” (which she thinks is giving her friends the toy that she doesn’t want to play with). The other day I took an Uber, and on my last vacation, I stayed in a house I found on AirBnB, both of which are parts of the “sharing economy.” And yesterday, I “shared” with my Twitter followers an interesting article on medical education.

read more

Of Mice and Men…and Maybe Muscle

By Kenneth Schikler, MD

As I am sure occasionally happens to us periodically, a young toddler was referred to me by gastroenterology after being evaluated for hepatopathy regarding elevated “liver enzymes.” This young boy ended up having muscle disease, and genetic testing confirmed Duchenne Dystrophinopathy. While he has been sent on to our MDA clinic for his future care, I was interested in looking into what was new in Muscular Dystrophy.

read more

What Caught Our Eye

by Brian M. Feldman, MD, MSc, FRCPC

We often hear of the glass ceiling that prevents the rise of women in academic medicine. In 2016, there is still much gender inequality in the world, as the UN clearly pointed out late last year. I’m old enough to remember the iconic “bra-burning” episodes in the 1960s; while much has been achieved, it’s remarkable how far we still have to go.

read more

What is our role in tackling mental health disparities in kids with rheumatologic diseases?

By Tamar Rubinstein, MD, MS

A month ago, the CDC came out with a report about a recent increase in suicides in the United States. The most disturbing trend was an increase of 200% among girls age 10-14 from 1999 to 2014. This statistic was quickly picked up by news outlets across the country. I heard it on NPR on my morning drive to work. But what about our kids? Are we sufficiently treating our patients in pediatric rheumatology for depression and anxiety? Are we sufficiently identifying them in the first place?

read more

Fish Oil: RA Prevention…or Just a Load of Carp?

By Jay Mehta, MD

“What about dietary changes?” I’m sure I’m not alone in getting this question more and more frequently with each passing year. It’s interesting that as our drugs get more effective at treating patients, families seem to be more interested in trying to treat with non-pharmacologic means.

read more

STOP-JIA Press Release March 2016

STOP-JIA Press Release

March 2016

The Childhood Arthritis and Rheumatology Research Alliance (CARRA), Inc. announced today that the first two patients had enrolled in the Start Time Optimization in Polyarticular Juvenile Idiopathic Arthritis (STOP-JIA) project. STOP-JIA aims to answer a critical question facing patients and doctors: “When is the best time to start biologic medications in polyarticular JIA?”

JIA is the most common pediatric rheumatic condition, affecting 1 to 4 in every 1000 children. More than half of affected children have a polyarticular form affecting many joints, and suffer worse outcomes and compromised quality of life. Symptoms of JIA include, but are not limited to joint pain, swelling and stiffness.

In STOP-JIA, patients, families, and their doctors will discuss and select one of 3 treatment plans developed and commonly used by pediatric rheumatologists which differ in the timing of when biologics are started. Patients will also contribute by answering surveys related to quality of life and burden of the disease and its treatments.

The first two of an anticipated 400 patients were enrolled, from the University of Wisconsin-American Family Children’s Hospital by Anna Huttenlocher, MD, and from the Joseph M. Sanzari Children’s Hospital at Hackensack University Medical Center.

“The results of this 3-year study will be a critical step forward in defining how to treat JIA and will change clinical practice.” said Yukiko Kimura, MD, Principal Investigator, Professor, Hackensack University Medical Center.

“We look forward to sharing the results of the study which we hope will fill important knowledge gaps to enable us to make informed medication decisions for desired health outcomes for our children,” saidVincent Del Gaizo, a father of a patient with JIA, and a key member of the STOP-JIA study team. Stakeholder engagement is a major component of the STOP-JIA project.

The STOP-JIA study was made possible by an award from the Patient-Centered Outcomes Research Institute (PCORI). For video information about the study, please visit:https://www.carragroup.org/our-research/stop-jia-1 or for study details, visit:https://www.clinicaltrials.gov/ct2/show/NCT02593006?term=stop-jia&rank=1

ABOUT CARRA

CARRA is an organization of more than 440 pediatric rheumatologists, researchers, and research coordinators and includes 95% of all pediatric rheumatologists/sites in North America. Founded in in 2002, CARRA operates as a nonprofit organization. CARRA has partnered with the Arthritis Foundation (www.arthritis.org) to align their scientific agendas and expand research in the fight against juvenile arthritis and other pediatric rheumatic disease. See www.carragroup.org for more information.

More STOP-JIA News

Improving Enrollment

“It can be challenging to locate and enroll new patients in registry studies,” notes Pam Weiss, Site PI for the Registry at CHOP.

read more

Stop-JIA Starts

Start Time Optimization for Biologics in Polyarticular JIA, (STOP-JIA), funded by PCORI, is open for enrollment.

read more

STOP-JIA Stakeholder Advisory Panel

Patients and their caregivers are the focus of STOP-JIA. They make up a majority of the Stakeholder Advisory Panel, which oversees and gives feedback about the project and its materials. Members of the Stakeholder Advisory Panel also include a nurse, research...

read more

Registry Update May 2016

CARRA Registry News

Registry Update May 2016

With 1,230 subjects enrolled in the CARRA Registry at 50 sites, we are on track to enroll approximately 3300 by the end of the year. We have posted two articles with enrollment tips, https://carragroup.org/chop-tips/  and  https://carragroup.org/profile-seattle-childrens-hospital/), and we will continue to profile successful sites and learn from their experiences. STOP-JIA, the PCORI-funded study of CARRA CTPs for Polyarticular JIA, has now enrolled 32 subjects. The STOP-JIA team is conducting calls with all activated sites to gain insight into the best ways to approach patients and families with a new diagnosis of pJIA.  With parent/stakeholder involvement, the team has developed a presentation that many sites are finding useful  (https://carragroup.org/about-stop-jia/).  The Prezi can also be viewed as a YouTube video that may be easier for some to view, which can be accessed here. In order to keep up with our enrollment, we need to enroll 54 patients by the end of June. We appreciate everyone’s efforts to approach every new patient with pJIA and their families about participating in STOP-JIA.

The Precision Decisions to STOP-JIA, the translational companion study, will soon begin.  This study is funded by a grant from the Arthritis Foundation to CARRA.  Rae Yeung, MD PhD, is the PI with co-investigators Sue Thompson, Nora Singer, and Betsy Mellins.  The two-part study involves a discovery phase using existing samples and a validation phase during which biosamples collected from STOP-JIA patients will be used to identify biomarkers that predict response and improved, more precise diagnosis in JIA.  Watch for more instructions and training about this soon!

We are also thrilled to announce the start of the First-line Options for S-JIA Treatment (FROST) study. The overarching goal of this project is for widespread adoption and implementation of the CTPs (http://www.ncbi.nlm.nih.gov/pubmed/22290637), for new onset sJIA among CARRA Registry sites to study the treatments’ comparative effectiveness, as well as their safety and tolerability, in the setting of everyday clinical practice. Given the current variability in treatment that we have documented and observed in the sJIA CTP pilot study we anticipate the different CTPs will be used in patients with a spectrum of characteristics and levels of disease activity. With analytic strategies to reduce selection biases, we anticipate being able to compare the effectiveness of biologic and non-biologic treatments for sJIA through this observational study.

The study structure of FROST will be different from STOP-JIA in that subjects will provide patient-reported outcomes a few times a week from home, and because the funding supports longer-term data collection beyond the 9 months of the CTP.  Also, funding from FROST will support an additional iPAD at each site for the collection of PROs during the office visit.   Aside from myself, the FROST study team includes Tim Beukelman, Peter Nigrovic, and Jason Jones.

With additional funding from the Systemic JIA Foundation (http://systemicjia.org/about-us/) and founders, Rashmi Sinha and Jon Boutelle, biosamples will be collected in FROST, to be used for studies that may help define the molecular heterogeneity of SJIA, develop new diagnostic tools and identify early predictors of response and long-term outcome.

Finally, we are excited to announce the addition of two Registry Fellows beginning July 1. Sarah Ringold and Mary Beth Son (see article here) will be working with us across a number of programs, projects, and publications associated with the Registry. An additional goal will be to increase understanding of operational aspects and logistics of the Registry. Their work will be invaluable as we operationalize this growing body of valuable information.

Thank you for all that you are doing and will continue to do to advance our research agenda.

Yuki

More Registry Updates

Fish Oil: RA Prevention…or Just a Load of Carp?

Fish Oil: RA Prevention…or Just a Load of Carp?

By Jay Mehta, MD

May 24, 2016

“What about dietary changes?” I’m sure I’m not alone in getting this question more and more frequently with each passing year. It’s interesting that as our drugs get more effective at treating patients, families seem to be more interested in trying to treat with non-pharmacologic means. You may remember the NY Times column “The Boy With a Thorn in His Joints “ from 3 years ago, which set off a bit of a firestorm within our community, about a boy with JIA whose parents tried various alternative and complementary therapies. A rebuttal in Slate discussed the “chemophobia” that is prevalent among our families. TheSlate piece was notable for its comparison of the molecular structure of the “chemical” methotrexate with that of the “natural” four-marvels powder (at the risk of ruining the surprise for you: both are pretty complex).

Much of the interest in dietary interventions relates to omega-3 fatty acids, which are thought to have anti-inflammatory effects. In fact, some work has shown a modest benefit of omega-3 fatty acids on disease activity in rheumatoid arthritis. Unfortunately, no pediatric rheumatologists have been willing to stake their careers on studying this, as a PubMed search for “omega-3 fatty acids and juvenile arthritis” results in exactly 4 publications (one each from Italy, Slovakia, and Egypt. Not sure where the mice from the 4th publication were from). For what it’s worth, the Egyptian study did show some improvement in disease activity, along with lowered cytokine levels, in JIA patients supplemented with 2 grams daily of omega-3 fatty acids.

So, despite the paucity of evidence, let’s presume that there may be some benefit to giving omega-3 fatty acids to our JIA patients and that it’s worth the fish burps that may ensue. A more interesting line of questions starts with what about giving omega-3 fatty acid to people at risk for developing arthritis? Can we prevent them from actually developing the disease? Is there any association between omega-3 fatty acid blood levels and arthritis development? A group led by Jill Norris tried to begin to answer that last question in patients at risk for developing RA in a paper hot off the presses from the Annals of Rheumatic Diseases.

In this paper, they performed two comparisons using subjects at high risk for developing but with no exam evidence of RA in the Studies of the Etiology of RA (SERA) cohort. The first used a nested case-control design to identify associations between red blood cell (RBC) omega-3 fatty acid % and rheumatoid factor and anti-CCP antibodies. The second comparison used the entire SERA cohort to determine whether reported omega-3 fatty acid supplement use was associated with RF and anti-CCP antibodies. They defined subjects as being high risk for developing RA if they had a first-degree relative (FDR) with RA or an FDR with HLA-DR4 (which is an RA risk allele). In looking for these associations, they paid special attention to theshared epitope (SE), which is the strongest genetic predictor of seropositive RA.

What they found was that if a subject was SE-positive, being RF positive was strongly associated with low RBC omega-3 fatty acid % compared with controls. However, this association was not seen for SE-negative subjects. The same was true for anti-CCP; that is, in SE-positive patients, anti-CCP antibody positivity was associated with lower RBC omega-3 fatty acid %.

In the second part of their study, they found that SE-positive subjects who reported using omega-3 supplements were about 1/3 as likely to have positive RF. This effect, again, wasn’t seen in SE-negative subjects. For anti-CCP, the same effect was seen, but the results were not significant.

But what does this all mean for us? After all, very few of our JIA patients have a rheumatoid factor and/or are anti-CCP positive. However, for this subset of patients, there is a strong association with the shared epitope. Because of the known genetic associations, I do counsel families with RF+ polyarticular JIA (probably better described as “childhood-onset RA”) that there is an increased risk of family members to develop arthritis. Should I recommend these families began supplementing their unaffected siblings’ diets with fish oil in the hope of preventing autoantibody development?

Let minnow what you think in the comments…

More What Caught Our Eye

Does Depression Cause Arthritis In Teenagers?

Mental illness is certainly an important aspect of many of our patients’ struggles, and I hope I’ve made the case earlier that it’s something pediatric rheumatologists should be paying attention to… There is a lot of good literature to show that patients with chronic...

read more

What Caught My Eye

It is not unusual for pediatric rheumatologists to be asked to see a child with persistent fever, without arthritis, who may or may not have had rash. Usually by the time the rheumatologist is called, the child has often been treated with antibiotics, and bacterial cultures have been done and were negative, and serologic or PCR studies for tick related illnesses and other infectious etiologies are in process or negative. Viral studies are done, and how specific/ disease related is the finding of a positive recovery of a respiratory pathogen from a nasal swab?

read more

Some breast milk a day keeps the IVIG away?

Perhaps you missed the New York Times article published in October 2015,  “Overselling Breast Feeding” or the firestorm that erupted afterwards. I didn’t. I was up nursing my newborn on our first week home and reading resultant Facebook posts, emails, and even an...

read more

Are we doing enough sharing with our caring?

By Jay Mehta, MD

As the parent of a 4-year-old, and the resident of a major metropolitan area, the word “share” (and its various constructions) is a daily part of my lexicon. I’m constantly reminding my daughter the importance of “sharing” (which she thinks is giving her friends the toy that she doesn’t want to play with). The other day I took an Uber, and on my last vacation, I stayed in a house I found on AirBnB, both of which are parts of the “sharing economy.” And yesterday, I “shared” with my Twitter followers an interesting article on medical education.

read more

Of Mice and Men…and Maybe Muscle

By Kenneth Schikler, MD

As I am sure occasionally happens to us periodically, a young toddler was referred to me by gastroenterology after being evaluated for hepatopathy regarding elevated “liver enzymes.” This young boy ended up having muscle disease, and genetic testing confirmed Duchenne Dystrophinopathy. While he has been sent on to our MDA clinic for his future care, I was interested in looking into what was new in Muscular Dystrophy.

read more

What Caught Our Eye

by Brian M. Feldman, MD, MSc, FRCPC

We often hear of the glass ceiling that prevents the rise of women in academic medicine. In 2016, there is still much gender inequality in the world, as the UN clearly pointed out late last year. I’m old enough to remember the iconic “bra-burning” episodes in the 1960s; while much has been achieved, it’s remarkable how far we still have to go.

read more

What is our role in tackling mental health disparities in kids with rheumatologic diseases?

By Tamar Rubinstein, MD, MS

A month ago, the CDC came out with a report about a recent increase in suicides in the United States. The most disturbing trend was an increase of 200% among girls age 10-14 from 1999 to 2014. This statistic was quickly picked up by news outlets across the country. I heard it on NPR on my morning drive to work. But what about our kids? Are we sufficiently treating our patients in pediatric rheumatology for depression and anxiety? Are we sufficiently identifying them in the first place?

read more

Fish Oil: RA Prevention…or Just a Load of Carp?

By Jay Mehta, MD

“What about dietary changes?” I’m sure I’m not alone in getting this question more and more frequently with each passing year. It’s interesting that as our drugs get more effective at treating patients, families seem to be more interested in trying to treat with non-pharmacologic means.

read more

TMJ POCUS? Or Hocus POCUS?

By Brian M. Feldman, MD, MSc, FRCPC

Point-of-care ultrasound – with its clever acronym POCUS – has become a big thing in rheumatology, and in peds rheum. As someone who hasn’t received ultrasonography training, I find it highly mystifying, and I’m not sure on which side I fall.

read more

CARRA Registry Fellows 2016-2017  

CARRA Registry News

2016-2017 Registry Fellows

May 2016

The CARRA Registry Executive Committee is pleased to announce the inaugural Registry Fellows for 2016-2017. Starting July 1, Mary Beth Son, MD, Assistant Professor of Pediatrics, Boston Children’s Hospital, Harvard Medical School, and Sarah Ringold, MD, MS, Assistant Professor of Pediatrics, Seattle Children’s Hospital, will serve as Registry Fellows. The Registry Fellows are expected to support overall strategy and operations as CARRA expands the Registry to include additional diseases, implements new comparative effectiveness studies and interventional studies, and operationalizes links to other databases. Through this process, the Registry Fellows will also gain expertise regarding the inner workings and operational aspects of the Registry, as well as have the opportunity to create new projects within the Registry, participate in designing various reports and authoring Registry manuscripts.


Dr. Mary Beth Son

Dr. Mary Beth Son

Since her pediatric rheumatology fellowship, Dr. Mary Beth Son has pursued database research, initially using the Pediatric Health Information System to study optimal management of Kawasaki disease.  This experience sparked her interest in exploring rare diseases using database methods. She next used the PHIS database to analyze clinical outcomes of hospitalized patients with childhood-onset systemic lupus erythematosus showing that minority race and ethnicity were associated with increased ICU admissions, end-stage renal disease and mortality. Recognizing that transition to adult care is a key risk period for these patients, she employed local databases to examine the clinical features of the transitioning population and found that patients undergoing transition had frequent gaps in care and a prolonged time between last pediatric and first adult provider visits, despite moderate disease activity.With established insight into the complexities of database maintenance and an understanding of the importance of communication between discrete silos of information, Dr. Son’s experiences are directly relevant to the CARRA Registry as it seeks to integrate biosamples and facilitate translational research.  She stated, “In this new role I hope to gain experience in an area of research to which I am deeply committed while obtaining valuable exposure to logistics of database management.”


Dr. Sarah Ringold

Dr. Sarah Ringold

During her pediatric rheumatology fellowship, Dr. Sarah Ringold became interested in disease activity and outcomes assessment in JIA, and developed projects assessing the validity of disease activity measures used in RA in JIA and additional projects looking at the relationships between disease activity and patient-reported outcomes in JIA. In addition to these projects, Dr. Ringold has participated in an AHRQ-funded program in comparative effectiveness through the University Washington. During that time she familiarized herself with comparative effectiveness techniques, the use of PROs in clinical trials, and novel interventional study designs. When asked why she was interested in the role of Registry Fellow, Dr. Ringold responded, “This is an important developmental time for the Registry as more sites become activated and familiar with the recruitment process, as additional diseases are added, as investigators seek funding for new studies, and as studies like STOP-JIA begin. Facilitating this growth and ensuring that the Registry remains responsive to investigators’ needs is, therefore, an important goal for my year as a Registry Fellow.”  She is excited to explore novel statistical approaches to observational data analyses that may be applied as more patients are enrolled and hopes to work on identifying opportunities for subsequent Registry Fellows to ensure the ongoing success of this program.


The Registry team is thrilled to have Drs. Son and Ringold join the effort to build and grow the CARRA Registry.

Applications for the Registry Fellowships will be open from January 30 to March 30, 2017, and the announcement of the 2017-2018 Registry Fellow will occur at the CARRA Annual Meeting in Houston.

More stories

Registry Update October 7, 2016

CARRA Registry Stats Enrollment: 2,002 8 sites have enrolled 1-5 patients 31 sites have enrolled 6-49 patients 14 sites have enrolled 50 or more patients Top Enrolling Registry Sites: PI Sarah Ringold/SC Luke Reichley, Seattle Children's Hospital: 228 PI Christi...

read more

Registry Update September 23, 2016

Registry Stats
Enrollment: 1,868
10 sites have enrolled 1-5 patients
30 sites have enrolled 6-49 patients
12 sites have enrolled 50 or more patients

Top Enrolling Registry Sites:
PI Sarah Ringold/SC Luke Reichley, Seattle Children’s Hospital: 217
PI Christi Inman/SC Suzy Jones, University of Utah Hospitals: 160
PI Jennifer Weiss/SC Mary Ellen Riordan, Hackensack UMC: 156

read more

Registry Update August 2016

Registry Stats
Enrollment: 1,769
10 sites have enrolled 1-5 patients
33 sites have enrolled 6-49 patients
9 sites have enrolled 50 or more patients

Top Registry Sites:
PI Sarah Ringold/SC Luke Reichley, Seattle Children’s Hospital: 214
PI Christi Inman/SC Suzy Jones, University of Utah Hospitals: 158
PI Jennifer Weiss/SC Mary Ellen Riordan, Hackensack UMC: 154

read more

Registry Update July 2016

Registry Stats Enrollment: 1,502 11 sites have enrolled 1-5 patients 30 sites have enrolled 6-49 patients 7 sites have enrolled 50 or more patients Top Registry Sites: PI Sarah Ringold/SC Luke Reichley, Seattle Children's Hospital: 182 PI Christi Inman/SC Suzy Jones,...

read more

Registry Update May 2016

With 1,230 subjects enrolled in the CARRA Registry at 50 sites, we are on track to enroll approximately 3300 by the end of the year. We have posted two articles with enrollment tips, https://carragroup.org/chop-tips/ and https://carragroup.org/profile-seattle-childrens-hospital/), and we will continue to profile successful sites and learn from their experiences.

read more

May 2016 Update

May 2016 Update

By Laura Schanberg, MD

Over 400 CARRA members, research associates, parents, patients, Arthritis Foundation leaders, representatives from the Lupus Foundation of America, Cure JM, and NIAMS, and pharma colleagues attended the CARRA Annual Meeting in Toronto, April 14-17. It was the most well-attended CARRA meeting to date!

The meeting program received highly positive evaluations from attendees. Our thanks go out to the planning committee, including Stacy Ardoin, Suzanne Li, Peter Blier, and Kelly Mieszkalski, for their hard work.  They meeting provided many opportunities for discussion, workgroup collaborations, organizational and research updates, networking, and fun with old and new friends. Patient families in attendance helped add a sense of focus and energy to many of the meetings.  We are now rested and ready to start working on the 2017 and 2018 meetings!

In the 2016 elections, members elected Rob Fuhlbrigge as CARRA Vice Chair, Emily von Scheven as Finance Chair/Treasurer, Peter Chira as Finance Committee member, Pam Weiss as JIA Committee Chair, and Sarah Ringold as JIA Committee Vice Chair.  Mark Connelly was re-elected as Pain Committee Chair. New members of the Elections Committee are Mara Becker, Deborah Levy, Kabita Nanda, and Melissa Tesher. We look forward to working with the newly elected leadership team! Thank you to those who participated on our slate of candidates. Over 55% of our membership voted in the election.

On behalf of the CARRA Steering Committee, I am particularly pleased to announce the first round of small grant awardees.  One of CARRA’s longstanding goals has been to offer grants, and it is exciting to see this goal fulfilled. You can view the list of projects here.  At the annual meeting, we alerted everyone to additional internal funding opportunities. CARRA will fund up to five $10,000 grants to support statistical analyses for presentations and publications this year on a rolling basis. In addition, CARRA will also award two $50,000 grants for collaborative projects. The RFP will be available early this summer with applications due in October.  Awards will be announced at the CARRA breakfast at ACR. Applications for 2017 cycle of small grants will be available around Labor Day. Watch the newsletter for how to apply.

The CARRA Registry Committee is pleased to announce the inaugural Registry Fellows for 2016-2017. Starting July 1, Mary Beth Son, MD, Assistant Professor of Pediatrics, Boston Children’s Hospital, and Sarah Ringold, MD, Co-director of the Clinical Research at the Center for Clinical and Translational Research, University of Washington, will serve as Registry Fellows. In this role, Drs. Son and Ringold will support the Registry strategy and operations as CARRA expands the Registry to include additional diseases, implements new comparative effectiveness treatment studies, designs reports, and develops publications. For more information about the Registry Fellows, click HERE. Applications for the 2017-2018 year will be available in spring 2017.

The SC and exec committee are engaged in many activities, most importantly a membership survey to gauge how and where CARRA can improve member services. Please look out for this. We hope to hear from the majority of members to guide future changes to make CARRA best meet everybody’s needs. Keep an eye on the CARRA website for new content and the implementation of a new members-only section,  we hope by the end of the summer. Of course, you can plan on the annual CARRA breakfast meeting at ACR and plans for the 2017 CARRA/PRYSM meeting in Houston is well under way.

I’ll be transitioning my role as President to Yuki Kimura over the next eight weeks, but I will remain actively involved in registry activities, clinical trials, and the CARRA executive committee. It has been a privilege to help direct CARRA’s progress over the past three years, and I look forward to the continued growth and development of the organization. I know the organization remains in terrific hands.

Laura

More Updates

September 2016 Update

To follow Laura Schanberg as President of CARRA is a daunting task! Under Laura’s leadership, we successfully enrolled the CARRA Legacy Registry, formed a 501c3 organization replete with a Board of Directors, an External Advisory Council, and new by-laws. We have a new website and a partnership with the Arthritis Foundation. We funded and launched the new CARRA Registry, began the first CTP comparative effectiveness study, and are working with Novartis and Roche on post marketing surveillance. CARRA is a part of PARTNERS, a patient-powered research network and began incorporating patient engagement in research. The 2016 annual meeting was a tremendous success, had a record attendance, and the energy was palpable.

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May 2016 Update

By Laura Schanberg, MD

Over 400 CARRA members, research associates, parents, patients, Arthritis Foundation leaders, representatives from the Lupus Foundation of America, Cure JM, and NIAMS, and pharma colleagues attended the CARRA Annual Meeting in Toronto, April 14-17. It was the most well-attended CARRA meeting to date! The meeting program received highly positive evaluations from attendees. Our thanks go out to the planning committee, including Stacy Ardoin, Suzanne Li, Peter Blier, and Kelly Mieszkalski, for their hard work.

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March 2016 Update

Over 250 CARRA members and supporters have already registered for the Annual Meeting in Toronto, April 14-17. We are appreciative of the work Executive Director Kelly Mieskalski has done to develop the program with the planning group including Stacey Ardoin, Suzanne Li, and Peter Blier. They have designed a vibrant meeting with a schedule that includes scientific discussions, work group planning, organizational and research updates, networking, and fun.

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CARRA Annual Scientific Meeting

We are planning an exciting meeting this spring and are looking forward to seeing everybody again! This year the CARRA Annual Scientific Meeting will be held April 14-17, 2016 in Toronto at the Westin Harbour Castle hotel.

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CARRA Newsletter April 11, 2016

Election Results

We are pleased to present the results of the CARRA 2016 Elections! Thank you to everyone who participated in this process, and especially to Norm Ilowite for his leadership.

Charter changes: Approved
Vice Chair: Robert Fuhlbrigge (Term: July 1, 2016-June 30, 2018)
Finance Chair: Emily von Scheven (Term: July 1, 2016-June 30, 2018)
Elections Committee: Mara Becker, Deborah Levy, Kabita Nanda, Melissa Tesher (Term: July 1, 2016-June 30, 2019)
Finance Committee Member: Peter Chira (Term: July 1, 2016-June 30, 2019)
JIA Chair: Pam Weiss (Term: July 1, 2016-June 30, 2019)
JIA Vice Chair: Sarah Ringold (Term: July 1, 2016-June 30, 2019)

Pain Chair: Mark Connelly (Term: July 1, 2016-June 30, 2019)

2016 Annual Meeting Update

Attend the poster session on Friday during the annual meeting!  Posters will be on display all day Friday, and Saturday until 4:00 PM.  Abstracts will be published in Pediatric Rheumatology Online Journal.  We will update you when publication occurs.

Download the 2016 Annual Meeting App today! The app will be used to send conference attendees important information before, during, and after the meeting. Please download the app using the instructions below, and elect to receive push-notifications to receive our updates and other important meeting messages.The Quick and Easy Way

Find the email that was sent from “CARRA’s CrowdCompass Mobile App.” CrowdCompass is the maker of our meeting app. Open the email on your phone and hit “Verify Account” and you will be on your way! If you have not received the email, please check your spam folder.

Take a Few More Steps
Can’t find the email from “CARRA’s CrowdCompass Mobile App”? Go to the appropriate app store on your phone and download the free application:

  1. On your phone, go to the App Store (on iOS devices) or the Play Store (on Android) and search for CrowdCompass Directory.
  2. Download/Install the app.
  3. Open the app and search for CARRA to find “CARRA Annual Scientific Meeting 2016.”
  4. Tap on the three lines in the top left-hand corner and click Login for more features.
  5. Enter your First and Last Name.
  6. Enter your Confirmation Code. (If you forget or don’t know your confirmation code, select “Forgot Code.” Access your email on your device and click “Verify Account.”
  7. Tap “Open App” and select “Finish” to be fully logged into the app.Note: You will be sent a confirmation email including all of your login credentials; these can be used to log in on a different device.

Avoid Roaming Charges While at the Meeting

Non-Canadian residents:  Before you leave home, contact your cell phone service providers regarding international calling plans. Verizon Wireless has an option to pay $2/day to use your regular plan while in Canada.

Registry Update 1030 patients are enrolled in the CARRA Registry, and 50 sites are eligible to enroll subjects. Seattle Children’s Hospital led enrollment last week with 7 subjects. 22 patients are enrolled in STOP-JIA. Thank you to Randall Children’s Hospital at Legacy-Emanuel in Portland, Oregon for enrollment of your first STOP-JIA patient! Congratulations to STOP-JIA top enrollers, Hackensack University Medical Center and Children’s Hospital of Philadelphia!

What Caught our Eye: A Question of Mind over Immunity

By Robert Fuhlbrigge, MD, PhD As pediatric rheumatologists, we are familiar with issues of anticipatory nausea in patients taking methotrexate and potent placebo effects that influence interpretation of clinical trials in our field. The power of the mind to influence physiologic symptoms is impressive. But what if we could harness this power for good? What if you could teach your patients to respond as if they were exposed to a medicine even if they were not? Have you have ever gotten sick after eating a specific food, and for weeks or months afterwards, you found you couldn’t face eating it again? This is called learned or conditioned taste aversion, which seems to make teleological sense (i.e., avoiding foods that have poisoned you in the past protects you from getting ill again), and can be both potent and long-lasting. In the 1970s, Robert Ader, a psychologist at the University of Rochester, was studying taste aversion in rats and stumbled across a most unusual result. Ader conditioned animals by providing a saccharin solution, a sweet taste rats love, with small doses of cyclophosphamide, which made them feel sick. After several cycles of training, the rats would refuse to drink the saccharin water, just as he expected. As a control, he force-fed conditioned rats a small amount of saccharine water to see if it caused a change in behavior. Instead, they died, succumbing to infection as if they had received a dose of cyclophosphamide. He followed this up by showing conditioned animals exposed to saccharine at the time of vaccination also produced markedly lower specific antibody responses, similar to mice who were treated with cyclophosphamide during the immunization period (Ader and Cohen, Psychosom Med. 1975).Read more…

Announcements

The NIH Collaboratory will be sponsoring an Ethical & Regulatory Issues of Pragmatic Clinical Trials Workshop on Tuesday, May 10, 2016, from 8 am to 4:30 pm in Lister Hill Auditorium on the NIH campus.  Participants may attend in person or view the session online. Information about the workshop, agenda, and registration can be found here: http://bit.ly/1XqOycq

Profile: Ann M. Palmer, President & CEO of the Arthritis Foundation

Photo: Ann Palmer addresses participants in CARRA’s Annual Meeting about involvement with local AF chapters.

Ann joined the Arthritis Foundation in 2013, with more than 30 years of successful nonprofit experience at three large voluntary health organizations: the American Cancer Society, the American Diabetes Association, and the Cystic Fibrosis Foundation.

With a BS in education from the University of Delaware, Ann began her career with the American Cancer Society in 1979, holding numerous roles of increasing responsibility over 18 years. In 1997, she joined the American Diabetes Association to oversee increased fundraising for their Mid-Atlantic region and led a nationwide operational restructuring that increased efficiency. During her 12 years at the Cystic Fibrosis Foundation, Ann’s leadership brought new business systems and a great team of staff and volunteers who annually raised over $100 million net income.

Ann is passionate about her work as the Foundation’s leader: “I see the everyday battles that people with arthritis face, and I’m truly inspired by their courage. We are responsible for helping more people say Yes to conquering those everyday challenges and fulfilling our mission of audaciously attacking arthritis and its effects.”

More AF News

iPeer2Peer Mentorship Program

The Arthritis Foundation is piloting a new peer mentorship program called iPeer2Peer. The goal of this program is to help and support teens with Juvenile Arthritis (JA) and related childhood rheumatic diseases. The iPeer2Peer Program was developed by the iOUCH...

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2016 National JA Conference

The Arthritis Foundation’s annual Juvenile Arthritis Conference is where kids, teens, young adults and their families come together from across the world to get better informed about juvenile arthritis and other childhood rheumatic diseases. Attendees are given the...

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