ROHHAD Research

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.  

4 Comments

  1. Alec Gray | 23rd February 2016 at 2:28 pm
     

    Hi. Not sure if you got my email, but I’m a student ambulance technician for the Scottish Ambulance service and would like to know how we can help in cases of exacerbation.

    I understand you have a consultant developing a paramedic handout. It would be great to see that/connect with him/her and to learn what the likely presentations would be.

    With something so rare, I think we all need to be aware of our limitations, and do whatever we can to ease the child’s situation.

    Do you have guidelines for clinical practice or intervention?

    Can you provide a list of the most common reasons for a trip to A&E? And what are the likely outcomes?

    I appreciate this may eat into your valuable time, and understand if you can not educate me in how I should treat a patient with ROHHAD. I would hope that should I attend a sick n child that I would be able to recognise the possibility of ROHHAD and treat any exacerbation appropriately.

    Please if you can let me know that you have received this, and if you have the time out resources to help out not.

    Kindest regards, Alec Gray

    Reply
    • Lisa Hunter | 28th February 2016 at 10:56 pm
       

      Hi Alec, I will email you this week once i have spoken to Dr Shaikh about educating Paramedics and also Technicians much thanks again for showing an interest in this means a lot. Will be in touch soon thanks Elisabeth Hunter

      Reply
  2. PAUL Checketts | 18th April 2016 at 1:53 pm
     

    Hello Lisa this is Paul Checketts in Idaho, USA. The training for paramedics stated above can you email that information to me please.

    Reply
    • Lisa Hunter | 7th May 2016 at 9:08 pm
       

      Hi Paul apologies have not managed onto the wesbite these past few weeks. Dr Shaikh is still working on a paramedic and medical handout that can be given to medical professionals in regards to educating them about rohhad and raising awareness. He insists that to give specific training may be detrimental and that paramedics should always respond in the way they are trained. Once the medical handout is ready i will forward you a copy thanks lisa

      Reply

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