Monday, December 15, 2014

Why YOU should participate in a food allergy research study (Northwestern University currently seeking participants)


Research scientists must continually pitch their ideas.  Scientists “pitch” a funding agency when they write a grant – an elaborate document of their proposed studies, often including significant preliminary data to convince grant reviewers that their ideas are “going to work.” Writing grants is an essential part of a scientist’s job because without the money supplied by grants, research grinds to a halt (even for a university researcher!). And if that isn’t challenging enough, the scientists performing studies with human subjects must “pitch” their ideas to recruit a sufficient number of study participants to acquire enough data to draw trustworthy conclusions. It is true – the job of a scientist is part salesperson!

So here’s my pitch to all of you.

Share this post with as many people as you know because:
  1. It will help a great group of food allergy researchers at Northwestern University recruit participants to better understand a concerning problem for food allergies – what makes adolescents/young adults (14-22 year olds) more at risk from their food allergic reactions.
  2. Participating is easy – it is a short survey that can be accessed by internet (i.e. you don’t have to drive to Chicago to participate!).
  3. Answering the study questions will undoubtedly spin off many more questions that will help fund future grants, thus driving our understanding of this problem forward and ultimately improving the lives of those affected by food allergies.

I am including the details of the study with appropriate links below. If you’re already “sold” on sharing this widely or even participating, great! Scroll down to the section - STUDY OVERVIEW - to read the details provided directly by Dr. Ruchi Gupta’s team at Northwestern. If you need a little more “evidence,” I’ve got that, too. Read on.

Dr. Ruchi Gupta and her team with Illinois state Attorney General Lisa Madigan this past July. Dr. Gupta and her team helped advocate for a new law to expand Illinois' existing stock epinephrine for schools law.

Why I strongly support Dr. Gupta’s research group:

Any food allergy researcher who “pitches” their work to a funding agency, whether it is the federal government, a non-profit organization, or private investors must convince reviewers that food allergies are in fact a significant problem. Dr. Gupta’s group is behind many very solid studies that other researchers cite in their grant proposals to do just that – convince reviewers that yes, food allergies are in fact a large problem. Her group recently defined how prevalent food allergies are among U.S. children (1 in 13 children under 18 years of age)1 and just how enormous the economic burden of food allergies truly is on the U.S. economy (estimated at nearly $25 billion annually).2

I have no doubt that the outcome of the current study will serve as a research catalyst for herself and other researchers - a prominent citation in a grant proposal to justify further research funding to define why adolescents/young adults are more at risk of fatal anaphylaxis from their allergic reactions.3,4,5 While this is tragically a recognized problem, researchers still don’t fully understand why. Is it part psychology (e.g. teenagers/young adults tend to take more risks in general)?  Is it part biology (e.g. something about the biology of this age group drives stronger reactions)? Or is it some combination of both? Her work just may start to tease out the evidence to address those very questions in the future. If we understand the problem, we can design strategies to mitigate them.

Dr. Gupta “gets it.” As a mother to a child with food allergies herself, her work is not only driven by her scientific integrity, but also a very personal drive to make a difference in the lives of all who are touched by food allergies. The scientific questions she asks truly come from a deep understanding of food allergies. In addition to her busy job, Dr. Gupta lends her voice as a prominent researcher to advocate for and support the larger allergy community as a whole. She has written a book, The Food Allergy Experience, and regularly updates her blog, chronicling the many events where she has given back to the allergy community in very powerful ways.

Please help Dr. Gupta’s research group help all of us! Participate. Make a difference.

STUDY OVERVIEW:


Researchers at Northwestern Medicine are conducting a research study entitled “Risk Taking Behavior among Adolescents with Food Allergy," which is currently enrolling participants.  The goal of this study is to learn more about the risk taking behaviors of food allergic adolescents – both in regard to general risk taking and risk taking as it relates to food allergy.  In order to participate in the study, adolescents between the ages of 14 and 22 years who currently have a food allergy are being asked to complete an entirely anonymous and confidential electronic survey.  No protected health or identifying information is being collected.  No compensation is being offered in exchange for study participation. All aspects of this research study have been approved by the Northwestern Institutional Review Board, IRB STU00097291.


If you are between the ages of 18 and 22 and are interested in participating in this study, please click on this secure link to access the anonymous and confidential survey [https://redcap.nubic.northwestern.edu/redcap/surveys/?s=TcT8XLeZeA].

If you are a parent with a food allergic child between the ages of 14 and 17 and have no objections to your adolescent child participating in this study, please forward him/her this link [https://redcap.nubic.northwestern.edu/redcap/surveys/?s=TcT8XLeZeA].  The link will take him/her to the completely anonymous and confidential survey.

If you would prefer for your child not to participate, no further action is required.

If you have any questions prior to making your decision, please feel free to contact me directly at jacqueline.pence@northwestern.edu, or Dr. Gupta at r-gupta@northwestern.edu.

References:

1.           Gupta RS, Springston EE, Warrier MR, et al. The prevalence, severity, and distribution of childhood food allergy in the United States. Pediatrics. 2011;128(1):e9-e17. doi:10.1542/peds.2011-0204.
2.           Gupta R, Holdford D, Bilaver L, Dyer A, Holl JL, Meltzer D. The economic impact of childhood food allergy in the United States. JAMA Pediatr. 2013;167(11):1026-1031. doi:10.1001/jamapediatrics.2013.2376.
3.           Bock SA, Muñoz-Furlong A, Sampson HA. Fatalities due to anaphylactic reactions to foods. J Allergy Clin Immunol. 2001;107(1):191-193. doi:10.1067/mai.2001.112031.
4.           Pumphrey R. Anaphylaxis: can we tell who is at risk of a fatal reaction? Curr Opin Allergy Clin Immunol. 2004;4(4):285-290. doi:10.1097/01.all.0000136762.89313.0b.
5.           Sampson HA, Mendelson L, Rosen JP. Fatal and near-fatal anaphylactic reactions to food in children and adolescents. N Engl J Med. 1992;327(6):380-384. doi:10.1056/NEJM199208063270603.




Thursday, September 25, 2014

Food Allergy Blogger's Conference 2014!

I'm thrilled to attend the Food Allergy Blogger's Conference (#FABlogCon) for the 2nd year in a row! Last year was truly a life-changing event for me, catalyzing many lasting, meaningful relationships across our food allergy community. The mutual understanding, support, and camaraderie of virtual friends meeting face-to-face was overwhelming in the best way possible for an introvert like me!

Look for me on Saturday morning at the break-out session on evidence-based blogging with Veronica LaFemina and Anna Luke from Food Allergy Research and Education (aka, FARE) and Henry Ehrlich, editor of Asthma Allergies Children and author of Food Allergies: Traditional Chinese Medicine, Western Science, and a Search for a Cure.

We hope to give lots of great advice and useful tips on blogging with integrity about food allergy science and discovery! I'll be leading the discussion on honest headlines and examining your personal bias. After all, how many times have you been frustrated by a misleading headline when it comes to food allergy research?!

If you can't make it, then please, please, please find me later and introduce yourself. I'm looking forward to meeting friends new and old (I'll be sure to give you one of my "business" post cards straight from Oregon!).

AND, if you can't make it to the conference, please follow along virtually on Twitter using the hashtag #FABlogCon. Selena at Amazing and Atopic did a wonderful job of explaining and providing a view of the Twitter feed, no Twitter account required!

See you soon!

My post on FABlogCon 2013

Friday, September 12, 2014

You're prepared for an allergy emergency, but is your child?

Be prepared. It’s a mantra in our house. I thought I was prepared, I thought my 6 year old son was prepared. He was not, and therefore, I was not. Let me explain…

There are “2 pillars” to managing food allergies – prevent reactions and prepare to respond to the emergency (see AllergyHome’s great educational materials). We’ve had a few years to “prepare” ourselves to respond to a food allergy emergency should it arise. I thought I was “prepared” for when to use the epinephrine autoinjector (e.g. EpiPen, Auvi-Q), and I would not hesitate to use it. As an allergy parent, you go through all the scenarios, you have nightmares about scenarios, you hear of other family’s scenarios, and every time, you think about how you would respond in that scenario.

Image used with permission by AllergyHome.org

Saturday, September 6, 2014

My "hot" new asthma piece at Asthma Allergies Children!

I'm no stranger to my enthusiasm for Asthma Allergies Children as a source of great information and thought-provoking original pieces on allergic disorders. 


You'll just have to go read the piece to find out why it's so "hot!"

"Large Cayenne" by André Karwath aka Aka - Own work. Licensed under Creative Commons Attribution-Share Alike 2.5 via Wikimedia Commons - http://commons.wikimedia.org/wiki/File:Large_Cayenne.jpg#mediaviewer/File:Large_Cayenne.jpg

Friday, August 22, 2014

Eosinophilic Esophagitis - Scientific Excitement - Part 2 of 2

PART 2  - BEYOND THE GWAS – FUNCTIONAL SIGNIFICANCE FOR EoE?

This is the exciting conclusion to parsing the findings in Kottyan, et al., 2014 (1).  Just in case you missed it or need a refresher, here is a link to PART 1 – BACKGROUND TO UNDERSTAND EoE AND THE RESEARCH FINDINGS.

Brief summary of Part 1
After the researchers compared over 1.5 million regions of the genome between EoE and control subjects, they identified 4 different regions that were strongly associated with EoE.  Going back to the analogy used in Part 1 – the researchers identified the flutes among the cacophony of the warming up orchestra.  Now, they needed to analyze the melodies those flutes were playing – stated biologically, they needed to figure out if any of those flutes (i.e. – regions of DNA identified in the GWAS) played faulty melodies (i.e. – errors in genes getting expressed that may lead to EoE). Just because there is a difference in DNA between EoE patients and those without EoE (controls) doesn’t necessarily mean that it is important biologically – a flute could play the wrong note, but it may harmonize with the intended note (e.g. make no difference to EoE). They were looking for a clear, dissonant “wrong note.” Lead author and researcher on the paper, Dr. Leah Kottyan relayed to me that in this line of work, identifying the differences in DNA is the “easy” part. Now came the “hard” part.