ROHHAD Research

Research is vital to identify improved treatments, deliver better quality of life and increase understanding of ROHHAD.
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 are however a global charity and ROHHAD affects children all around the world.  Therefore we are very happy to consider funding applications for research into ROHHAD from anywhere in the world.

When we are open to applications for funding requests, all proposals will be sent to the Chief Scientific Office in Scotland.  

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 the Scottish Government will fund the research however proposals will be reviewed by Scotlands CSO.

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 under £50,000.00.  

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 and internationally.

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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