ausEE Inc.

a charity dedicated to improving lives affected by eosinophilic disorders

Research Projects - Completed

Congratulations to Mary and the Royal Prince Alfred Hospital team on their research into EoE. We are pleased that ausEE and all of our members who so generously donated could be a part of this project. 

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On behalf of the Department of Clinical Immunology at Royal Prince Alfred Hospital we would like to thank ausEE for their kind donation towards research currently underway. Here Mary Agapides, a scientist working in the department talks about her research.

Our research aimed to find alternate methods of diagnosing EoE and the food allergens potentially involved in causing disease. Currently, the only way to diagnose EoE and monitor the success of treatment, is via endoscopy and biopsy. These procedures are expensive, invasive and can be distressing, particularly as EoE patients often require regular testing to monitor their disease. We were specifically focused on blood tests that could be used to aid in the diagnosis of EoE.

We found two proteins circulating in the blood of EoE patients, eosinophilic cationic protein (ECP) and eosinophil-derived neurotoxin (EDN), that were both indicative of disease. The only problem is, these proteins also seem to appear in individuals with other atopic diseases, such as allergic rhinitis, asthma and eczema, conditions also seen in EoE patients. This means ECP and EDN aren’t ideal to use for an initial EoE diagnosis, however, there is potential for these biomarkers to be used to monitor treatment success in EoE patients.

Dietary manipulation is a popular treatment for EoE, however, deciphering which foods are causing disease is often a lengthy and complicated process. We also found a new potential method of “screening” for food allergens in EoE patients which involved looking in the blood for specific IgE reactions to a large panel of foods. This panel identified new potential problem foods in EoE patients, such as egg yolk, chicken, lamb, orange and fruits that are associated with latex allergies. This new method could also be useful in predicting whether dietary treatment is the best option for an EoE patient and if medication should also be considered in controlling their disease. Our research is continuing to validate this method in a larger group of patient.

Mary performed this work as part of Bachelor of Science (Advanced), Honours Class I (Immunology) at Sydney University. 

At the Australasian Society of Clinical Immunology and Allergy 2016 Conference (ASCIA 2016) Mary Agapides from Royal Prince Alfred Hospital presented her poster on this study to assess the utility of serum-based testing in the diagnosis and monitoring of EoE. 

You can read more about their research findings here.
 

Research Projects - In Process (surveys are now closed)

EXPLORING THE EXPERIENCES OF ausEE MEMBERS LIVING WITH EOSINOPHILIC OESOPHAGITIS

Dear ausEE member,


You are invited to participate in a research study which aims to explore your experiences with Eosinophilic Oesophagitis (EoE). This study is being conducted by Dr Robert Loblay, Dr Anne Swain, Dr Velencia Soutter, Dr Louise Wienholt, Ms. Mary Agapides and Ms Annabel Clancy in the Department of Clinical Immunology at Royal Prince Alfred Hospital.


The study has three aspects outlined below, and you may choose to participate in any or all of these. Participation is completely voluntary. Consent is implied on completion of the relevant instrument. Although ausEE has been involved in planning of the study and is distributing this information, they will not be aware of which members have or have not participated.


You are eligible to participate if you are an adult diagnosed with EoE (aged 16 years or older) or if you are a parent of a child diagnosed with EoE (aged 0-15 years) and are a RESIDENT of Australia.


(1) Questionnaire

This aspect of the study involves an online questionnaire which takes approximately 30 minutes to complete. The links to the questionnaires can be found below.

Please choose the adult questionnaire if you are aged 16 years or over:

https://www.surveymonkey.com/r/adulteoe

Please choose the children’s questionnaire if you are a parent of a child aged 0-15 years:

https://www.surveymonkey.com/r/childeoe


(2) 4-day weighed food diary

Completing a 4-day weighed food diary involves weighing/measuring all the food, drink and supplements you/your child consumes over four consecutive days (including one weekend day) and submitting your diary for analysis.

This will give an accurate picture of your or your child’s overall nutritional intake. This can then be compared to the recommended intake of each nutrient, as an indicator of your/your child’s nutritional status. If you choose to participate in this part of the study you will be provided with a copy of your nutritional analysis, with feedback from a dietitian.

There are 3 ways to complete and submit this food diary:

If you would like to participate in this aspect of the study, please see the instruction sheets linked above and choose whichever method you prefer.


(3) Focus Groups

The focus groups will run in the early evening for approximately 1½ to 2 hours and will be conducted at the RPAH Allergy Unit. In these sessions you will have the opportunity to discuss your experiences in relation to living with EoE together with a small group (8-10) of fellow study participants. Partners are also welcome to participate. Separate focus groups will be held for adults with EoE, and for parents of children with EoE. For more information please read this participant information sheet. If you would like to participate please email: [email protected].


If you would like further information or have any questions about any of the three aspects of this study, please do not hesitate to contact Annabel Clancy (email: [email protected]; phone: 02 9515 3019 or 0448 230 279). This study has been approvd by the Ethics Review Committe (RPAH Zone) of the Sydney Local Health District. Any person with concerns or complaints about the conduct of this study should contact the Executive Officer on (02) 9515 6766 and quote protocol number X15-0169.


Yours sincerely,

Robert Loblay, Anne Swain, Velencia Soutter, Louise Wienholt, Mary Agapides, Annabel Clancy

 

Research Grants - Awarded

November 2016 - ausEE is pleased to announce that we have awarded grant funding of $8,000 to Dr Hamish Philpott, Dr Evan Dellon and Dr Sanjay Nandurkar for the research project 'Antigen presentation and acute inflammation in EoE'.


This project has the potential to streamline the diagnosis and treatment of patients who present with oesophageal eosinophilia. 


We got this lovely message back from Dr Philpott when we let him know their grant application was approved. 'Your support of our research is so vital. We fully comprehend the hard work that goes into organising and fundraising, and faithfully pledge to diligently pursue our work to do justice to your generosity.'

March 2016 - ausEE has donated $20,000 of its research funds supporting a new study from The University of Newcastle. This study aims to develop new treatments for Eosinophilic Esophagitis (EoE) and other eosinophilic gastrointestinal disorders (EGIDs).


Currently there are few options for the management of these conditions. This study aims to create new targeted drug delivery therapies through the use of nanotechnology. 


The study is being conducted at the University of Newcastle, Hunter Medical Research Institute and John Hunter Hospital, and should be complete within the next two years. We look forward to sharing the results with you.


We are grateful for Laureate Professor Nicholas Talley and his team for their dedication to Eosinophilic Gastrointestinal Disorders and wish his team every success.

June 2015 - ausEE is pleased to announce that it has awarded the Royal Prince Alfred Clinical Immunology & Serology team a grant of $8,000 towards its latest research into EoE.

Their research will take blood samples from adult patients before, during and after their treatment in the hopes of identifying certain biomarkers in the blood in order to help detect foods that may be associated with the activation of EoE. If successful it could help in the selection of appropriate dietary restrictions with a blood test, rather than an invasive endoscopy.

Although the study focuses on adults with EoE, the results could point specialists in the right direction for EoE management for all ages.

The study should be complete within the year and we look forward to sharing those results with you.

We are confident that this is a step in the right direction for Australian researchers and are hopeful for further investigations to follow.
 

Join the CEGIR Contact Registry

The Rare Diseases Clinical Research Network (RDCRN) Consortium of Eosinophilic Gastrointestinal Disease Researchers (CEGIR) Contact Registry is a way for patients with eosinophilic gastrointestinal diseases and their family members to learn about CEGIR research studies they may be able to join.
This is an international registry. Participation is completely voluntary and you may choose to withdraw at any time. There is no cost to join the Contact Registry. Join here.

Page last modified: 3 March, 2017