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.
- 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)
- 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]).
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!
We are very excited to announce that CARRA had a record year for membership growth! We had 125 new members join in 2016, bringing our current membership total to 560!
CARRA Registry Stats
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: 263
PI Christi Inman/SC Suzy Jones, University of Utah Hospitals: 191
PI Jennifer Weiss/SC Mary Ellen Riordan, Hackensack UMC: 172
11 sites have enrolled 1 patient
17 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: 8
PI Pamela Weiss/SC Jenna Tress, Children’s Hospital of Philadelphia
PI Emily von Scheven/SC Bhupinder Badwal, University of California at San Francisco Medical Center