OUCH(UK) Organisation for the Understanding of Cluster Headache


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Volunteers needed for new study

Finding the cause of cluster headache is a vital step towards finding the cure for this disease and The Institute of Neurology are undertaking a new study into the genetic basis of cluster headache. All they need from you is some details of your family CH history and a small sample of blood, but this study is special in that non-sufferer family members can get involved too. Read the details below and see if you and your family qualify to volunteer for this very important study.

Finding the Cause of Cluster Headache

Study Outline:

We currently know very little about the cause of Cluster Headache, however, we do know that this condition can run in families. This suggests a potential genetic basis for this distressing condition and the chance to find a cause. In order to investigate this further, we are currently collecting a small blood sample from sufferers to identify common and potential causative genes. In particular, we are lookingfor families where there are 2 or more people affected by Cluster Headache. Our ultimate goal is to gain understanding into this complex condition and discover new treatments.

Who are we?

We are the "Synaptopathies Study Group" at the Institute of Neurology, Queen Square, London. We recently received a grant from the Wellcome Trust to investigate a number of episodic disorders, including cluster headache and severe migraine. We are working with headache experts around the world to maximise the patient benefit of this funding. Our research will not interfere with the current clinical management of your headaches by your neurologist.

How can you help?

If other members of your family suffer from Cluster Headache? We would love to meet you, hear your story and explain the study further. Provided you are happy to participate, we will take a small sample of blood for DNA analysis. This can also be arranged through your GP by post .

If you have NO family members with cluster headache but BOTH your parents are also willing to take part in the study, we would be delighted to hear from you to arrange taking a small sample of blood from you and your parents.

Who to contact?

Please contact Dr. Emer O’Connor at:   e.oconnor@ucl.ac.uk or call: 0203 4484321 on Monday or Thursday.

Thank you in advance for your help!

Without studies like this we will not be able to find the cause and ultimately, the cure for cluster headache; the more people who take part, the faster we will reach that goal of being able to say, "yes, there is a cure". PLEASE VOLUNTEER if you and your family meet the study criteria. We can't get that cure without you!

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