ROHHADRESEARCH Archives - ROHHAD Association

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ROHHAD Association Research Grants 2019 to 2020



We are delighted to officially announce that the ROHHAD Association is now OPEN to proposals for funding for Medical Research into ROHHAD Syndrome.

The available funding for 2019/2020 research grants is a staggering £275,000.00 which would not have been possible without the help of all of our incredible supporters, our inspiring children their families and their friends. Each and everyone of you have contributed and we couldn’t have done it without you.

We want to say a MASSIVE THANK YOU to you all and also to our charities special friend Robert Downey Jr and all of his amazing fans the ducklings whom helped us immensely with raising awareness, funds and the #GoMadForROHHAD campaign. Fulfilling Aaron Hunters Wish to help raise awareness and funds to #FindACure for his friends all around the world battling the Evil ROHHAD

Applications for funding closes on the 1st of February 2019 and we hope to be supporting ROHHAD Research Financially by April 2019. We will keep you all updated on the progress of ROHHAD Research as this moves forward.

Please click the link to view our charities Research Strategy and also the criteria for this coming years funding proposals. The Strategy and ROHHAD Research Priorities were created in consultation with the families affected by ROHHAD Syndrome.

ROHHAD Association Research Strategy

We hope that we can rely on your support now and in the future to ensure that one day we do indeed Find A Cure!

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ROHHAD Research UPDATE – International ROHHAD REDCap Registry

research-2Please see the extract below from our recently updated Research Page.  There is currently an International Registry being compiled by Lurie Children’s Hospital in Chicago.  They are looking for participants from around the world and would like for all the currently diagnosed ROHHAD children to participate if possible.  Please read below and feel free to contact us here at the ROHHAD Association at rohhadassociation@gmail.com if you have any questions about this.   We also have some updated news to share from the UK, so please read below and contact Chicago hospital via the links if your able to participate.  We will continue to update any research information we have as it comes into us here at the charity.

 All of us here at the ROHHAD Association believe that only through working together collaboratively with all those around the world that have experience either of working with children battling ROHHAD or parenting and caring for them will we be able to understand the disease better and hopefully one day find a cure  

‘Research is vital to identify improved treatments, deliver better quality of life and increase understanding of the ROHHAD condition.
It is imperative that research is done if we stand any chance of saving the lives of the children diagnosed.

The ROHHAD Association is currently working hard to raise funds so that research into the condition can begin here in the United Kingdom were we are based.
At present no research into ROHHAD is underway in the UK, but we believe that as our donations increase with your help we will be able to change this.

We also hope to achieve enough funds that will enable us to consider research funding requests into ROHHAD from around the world.

There are Endocrine consultants in Scotland and England within the  UK who are very interested in beginning research into ROHHAD.  They are now working collaboratively with one another to prepare research proposals.  When we receive the proposals we will have them independently checked by both scientists and medical doctors to ensure that the research funding is viable and relevant to ROHHAD Research.  

We have also been assured by Scotland’s First Minister Nicola Sturgeon that any research proposal about ROHHAD will be looked at and considered by the Chief Scientific Office in Scotland.  This does not mean that funding will be approved however they will review all proposals.  

At the time of writing this we have been made aware that it is reasonable to expect the cost of at least one year of research to be approximately £300, 000.00.  We have raised to date just over £2600.00.  

We will continue to work incredibly hard to raise awareness and the funds required so that we can support and fund research within the UK.

There is currently some research being undertaken in the USA and we will blog and post about research projects from around the world.

We have recently been asked by the team at the Ann & Robert H. Lurie Children’s Hospital of Chicago to include the following information on our website.  We are more than happy to share this with you all and ask that any family affected by ROHHAD who is reading this for the first time to please either contact us here at the charity for further information or click on the links below.

Lurie Childrens Hospital are currently undertaking some Research into ROHHAD, they have started an international registry for children diagnosed with ROHHAD and they are actively seeking participation in this Registry

An international Registry will help any team researching ROHHAD and allows a collaboration of the number of children diagnosed around the world as well as a collaboration of key information about the children affected.

Please click the following links for further information about the registry and details of how you may be able to participate.

https://www.luriechildrens.org/en-us/care-services/specialties-services/center-for-autonomic-medicine/research/Pages/international-rohhad-redcap-registry.aspx

https://redcap.nubic.northwestern.edu/redcap/surveys/?s=THHEHWHRX9

The hospital at Chicago is also currently updating their website to include some other ROHHAD studies that they are currently doing and are preparing to do.  It may also be that you would be interested in participating with these studies.  

Participation in the International Registry requires the Online interest form to be completed.  Participation in the other studies requires participation in the International Registry.

If you have any questions relating to the International Registry you can contact us here at the charity and we will happily try to help. ‘

 

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