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Childhood Neurological Conditions Survey

30 September 2020

The British Paediatric Neurology Association and James Lind Alliance have launched a survey to define the Top 10 unanswered questions about the treatment of childhood neurological conditions, where there is uncertainty about the effectiveness of treatments. 

Children and young adults (aged 0-25) with neurological conditions are invited to suggest your questions about treatments, therapies or procedures aimed at improving your health and wellbeing. Help shape the future of research into Childhood Neurological Conditions by sharing your experiences. Anyone affected by Neurofibromatosis is welcome to take part; patients, families, friends and carers.

It’s important our community shares its voice to ensure that the surveys and workshops carried out by, The British Paediatric Neurology Association and James Lind Alliance, are representing those whose lives are affected by NF.

The eventual aim is to turn these priorities into funded research questions that have the potential to go on to improve the lives of children with Neurofibromatosis and other neurological conditions.

If you are interested in taking part in this survey click the button below:

Take Part:

Nerve Tumours UK is not responsible for any data collection or content of the research.  

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Emily Owen: World NF2 Day

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Registered Charity Number: 1078790 and SC045051

Nerve Tumours UK has taken reasonable care to ensure that the information contained on this website and in its newsletters, literature is accurate. Nerve Tumours UK cannot accept liability for any errors or omissions, or for information becoming out-of-date. Any information given is not a substitute for getting appropriate medical advice from your own GP or other healthcare professional.

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OT Sabine Koinig

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Masterclasses in NF: Constitutional Mismatch Repair Deficiency Syndrome as Differential Diagnosis to NF1/Legius Syndrome - Prof. Dr. Katharina Wimmer

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Pierre Wolkenstein, MD, PhD, Hopital Henri-Mondor, Paris, France

Laura Fertitta, MD, Hôpital Universitaire Henri Mondor

Sirkku Peltonen, MD, PhD, University of Gothenberg, Sweden

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NF1 Working Together Part 2: from a tentative diagnosis and beyond

Understanding the impact that a tentative diagnosis has on a parent. Information and access to the existing NTUK and Specialist Nerve Tumours medical and non medical care network.

NF1 Working Together Part 1: from a tentative diagnosis and beyond

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Masterclasses in NF: Surgery in NF2 - Michel Kalamarides & Andrew King

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Andre Rietman, PhD, Erasmus University Medical Center, Rotterdam, Netherlands

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Susie Henley, DClinPsy, PhD, Guy’s and St Thomas’ NHS Foundation Trust, London UK

Thomas Pletschko, PhD, Medical University of Vienna, Austria

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Eric Legius, MD, PhD. Head of Clinical Genetics Department of the University Hospital Leuven, Belgium

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INFER (International NF Educational Resources) is a series of online educational lectures for medical professionals by leading neurofibromatosis experts. The Masterclasses take place online approximately once a month, each on a different topic, and include real-time interaction between the expert presenter and the participants. The presentations are conducted in English, with real-time audio interpretation available in 6 additional languages: French, German, Italian, Portuguese, Russian, and Spanish. A recording of each INFER masterclass is then be made available online in each language for those who could not attend an event. INFER is an initiative of Children’s Tumor Foundation Europe, supported by an educational grant from AstraZeneca. https://ctfeurope.org/research/masterclasses-in-nf

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