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DanMalcore

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Dan
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Dear Dan, 

I would like to let you know that the first issue of our Hyperacusis newsletter, ICH2 News, is now available online. This is a bi-monthly newsletter we have started up to accompany the 2nd International Conference on Hyperacusis, next July. 

On behalf of the organising committee of the ICH2, I would appreciate if you could kindly circulate our first free of charge online newsletterI was wondering would you be able to post a link to it on the Hyperacusis Network website do you think? I'm sure many with an interest in hyperacusis would find it informative and relevant.

 The PDF version of the newsletter is available via:

http://hyperacusisresearch.co.uk/ESW/Files/ICH2_Newsletter,_Issue_1,_Early_Online.pdf

The first issue covers:

  • Public involvement in Hyperacusis research
  • Implications of experimental studies for clinical practice 
  • Hyperacusis combined with tinnitus 
  • Learning from OCD
  • Patient's perspective  
  • Key conclusions from the 2013 conference 
  • And more
I look forward to hearing from you. 
 
Best wishes,
 
Safeeya

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DanMalcore

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Dan
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From http://hyperacusisresearch.co.uk/

How to get involved:
 


Public Involvement theme of the conference allows for open communication between researchers/clinicians and patients/public which can result in high quality health and social care and research.    

 

What is Hyperacusis?

Hyperacusis is an umbrella term encompassing several different types of sound intolerance affecting adults and children alike. The term is generally used to describe the discomfort caused by experiencing everyday sounds as intolerably or painfully loud. It can present on a spectrum from a mildly annoying problem to a life changing one.

 

Why is it important?

The quality of life for those with severe hyperacusis can be significantly impacted.  As one can imagine, it can become difficult to function normal in everyday situations if the sound of a vacuum cleaner, a baby crying or the turning of newspaper pages is unbearable and painful. This can often lead to social isolation and depression.

  

Why we need to raise public awareness?

The subjective nature of hyperacusis makes it difficult to diagnose. This partly explains the overall lack of research. A search on papers published over the last five years using MEDLINE database revealed that on average only 8 papers per year were published on hyperacusis as opposed to 216 papers per year on tinnitus, 8193 papers per year on HIV and 38468 papers per year on cancer.

 

The exact prevalence of hyperacusis in the general population is not clear, however, a recent study using an international tinnitus research database revealed that as much as 55% of 1713 patients with tinnitus had hyperacusis too. Patients with hyperacusis were younger, had higher distress and higher rates of pain disorders and vertigo (Schecklmann et al, 2014).

 

These figures go to show that hyperacusis is a real problem affecting many people daily. Unfortunately, more often than not those with hyperacusis suffer in silence. Thinking they are alone and not realising what condition they have or knowing that there are any services to help them.

 

Hyperacusis is often associated with other conditions, most commonly tinnitus, but it is important to establish hyperacusis as a condition in its own right. Public involvement is essential in helping to shape the future of hyperacusis research, care and management.

 

Anyone affected by hyperacusis or with an interest in this condition could provide valuable information for clinicians and researchers. Helping to facilitate the clinical service provided and reaching out to all those affected by hyperacusis.

 

How you can get involved

The conference theme is geared towards just that – Public Involvement in promoting research and guiding clinical practice. There are several ways that the public or people who experience hyperacusis may contribute to this conference. These include:   

Joining the Lay Fellow Committee in order to advise which papers should be selected for oral or poster presentations.

 

Commenting on presentations or contributing by giving a presentation

 

Reviewing the literature

 

Designing leaflets/questionnaires

 

Developing focus groups

 

Contributing to the conference newsletter which would be circulated to participants 

 

Communicating research findings with others  

 

Managing or taking part in future research projects  

 

Pre conference workshop

In order to improve access to scientific and technical information for participants who do not have any audiology background, we have planned a pre-conference introductory workshop. The aim of this workshop is to offer appropriate information, support and training allowing you to contribute and benefit fully from the conference.

 

July 2015, Birkbeck College

 

Workshop organizer: Hashir Aazh

 

Provisional Agenda

 

Why should you be involved?

 

What causes hyperacusis?

 

How to assess hyperacusis

 

Hyperacusis therapies and their evidence base     

 

How to review the literature 

 

How to distinguish strong from weak research  

 

Presentation skills

 

Post conference plans

There will be various opportunities to maintain your involvement in research and practice after the conference. You will have the opportunity to join an advisory group which you can have an influence on future directions for research as well as standards for clinical guidelines. You also may join an advocacy group in order to advocate the rights of people who experience hyperacusis in terms of access to health, education, occupation, and recreation.


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Paulbe

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Reply with quote  #3 
Just seeing this makes me feel better.

Thanks Dan
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