Helpline 07939 046 030
Freephone 0300 102 17 22*

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.  

Filter News

Search by keyword
Filter by Date
Category
Reset

Becky’s Story

From dealing with her family's NF1 to improving her fitness and running marathons, have a read of Becky's amazing story here:

Read More

Beth’s “Novaspers Online Dog Show”

Find out more about Beth's online dog show here:

Read More

“Charity Shave Off” for NF in Northern Ireland

Janice and her family recently held a charity shave off in Northern Ireland. Find out more about the event here:

Read More

Blackpool Magic Convention 2020

Find out more about the convention in aid of NTUK and how you can get involved here:

Read More

Reflections on 2019

Check out our reflection on what we feel was an incredibly succesful 2019 for the charity:

Read More

Helen’s Story as told by her Mum Pauline

Due to her NF1, Helen has faced several struggles. Mum Pauline has openly shared her daughter's experiences with us here:

Read More

Nicola’s NF2 Journey

Nicola creates her own YouTube videos to help promote NF2 awareness. Find out more about her NF2 journey here:

Read More

Making the Future of Work inclusive of persons with disability

Check out James' recent presentation at a conference in Geneva highlighting issues of "face equality" in the workplace

Read More

The Royal Society - A Quest for the perfect Human…? A debate on the implications of human genome editing

Find out more about the debate recently undertaken at The Royal Society here:

Read More

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.

Website by Optima.

0 seconds of 1 hour, 6 minutes, 7 secondsVolume 90%
Press shift question mark to access a list of keyboard shortcuts
00:00
1:06:07
1:06:07
 

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

Constitutional Mismatch Repair Deficiency Syndrome as Differential Diagnosis to NF1/Legius Syndrome

Prof. Dr. Katharina Wimmer, Medical University of Innsbruck

0 seconds of 57 minutes, 6 secondsVolume 90%
Press shift question mark to access a list of keyboard shortcuts
00:00
57:06
57:06
 

Masterclasses in NF: Rare NF1-Associated Tumors in Adults - Eric Legius & Prof. Ellen Denayer

Masterclasses in NF: Rare NF1-Associated Tumors in Adults

Eric Legius, MD, PhD, University Hospital Leuven

Prof. Ellen Denayer, University Hospital Leuven

0 seconds of 58 minutes, 51 secondsVolume 90%
Press shift question mark to access a list of keyboard shortcuts
00:00
58:51
58:51
 

Masterclasses in NF: Optimising Hearing Outcomes in NF2-Related Schwannomatosis - Simon Freeman

Masterclasses in NF: Optimising Hearing Outcomes in NF2-Related Schwannomatosis

Simon Freeman, MPhil FRCS, Manchester Royal Infirmary and Salford Royal Hospital

0 seconds of 58 minutes, 14 secondsVolume 90%
Press shift question mark to access a list of keyboard shortcuts
00:00
58:14
58:14
 

Masterclasses in NF: NF1 Dermatological Manifestations - Pierre Wolkenstein, Laura Fertitta & Sirkku Peltonen

Masterclasses in NF: NF1 Dermatological Manifestations

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

Laura Fertitta, MD, Hôpital Universitaire Henri Mondor

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

0 seconds of 57 minutes, 40 secondsVolume 90%
Press shift question mark to access a list of keyboard shortcuts
00:00
57:40
57:40
 

Masterclasses in NF: Breast Cancer in NF1 - Gareth Evans

Masterclasses in NF: Breast Cancer in NF1

Gareth Evans, MD, University of Manchester, UK

0 seconds of 58 minutes, 9 secondsVolume 90%
Press shift question mark to access a list of keyboard shortcuts
00:00
58:09
58:09
 

Masterclasses in NF: Pain in Non-NF2-Related Schwannomatosis - David Pang

Masterclasses in NF: Pain in Non-NF2-Related Schwannomatosis

David Pang, MD, ChB. Guys and St Thomas' Hospital NHS Trust, London

0 seconds of 1 hour, 2 minutes, 16 secondsVolume 90%
Press shift question mark to access a list of keyboard shortcuts
00:00
1:02:16
1:02:16
 

Masterclasses in NF: Distinguishing Non-NF2-Related from NF2-Related Schwannomatosis - Clinical and Genetic Approaches - Said Farschtschi

Masterclasses in NF: Distinguishing Non-NF2-Related from NF2-Related Schwannomatosis - Clinical and Genetic Approaches

Said Farschtschi, MD, University Medical Center, Hamburg-Eppendorf, Germany

0 seconds of 51 minutes, 45 secondsVolume 90%
Press shift question mark to access a list of keyboard shortcuts
00:00
51:45
51:45
 

Masterclasses in NF: NF1 Pre-Implantation Genetic Diagnosis - Eric Legius & Prof. Ellen Denayer

Masterclasses in NF: NF1 Pre-Implantation Genetic Diagnosis

Eric Legius, MD, PHD, University Hospital of Leuven, Belgium

Prof. Ellen Denayer, University Hospital of Leuven, Belgium

0 seconds of 8 minutes, 56 secondsVolume 90%
Press shift question mark to access a list of keyboard shortcuts
00:00
08:56
08:56
 

NF2 Working Together: 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.

0 seconds of 10 minutes, 4 secondsVolume 90%
Press shift question mark to access a list of keyboard shortcuts
00:00
10:04
10:04
 

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.

0 seconds of 8 minutes, 6 secondsVolume 90%
Press shift question mark to access a list of keyboard shortcuts
00:00
08:06
08:06
 

NF1 Working Together Part 1: 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.

0 seconds of 58 minutes, 11 secondsVolume 90%
Press shift question mark to access a list of keyboard shortcuts
00:00
58:11
58:11
 

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

Masterclasses in NF: Surgery in NF2

Michel Kalamarides, MD, PhD, Hôpital Pitié-Salpêtrière, Paris, France

Prof Andrew King, MBBS FRCS FRCS(SN), Salford Royal Hospital, Manchester, United Kingdom. Member of the MAB of Nerve Tumours UK

0 seconds of 1 hour, 3 minutes, 36 secondsVolume 90%
Press shift question mark to access a list of keyboard shortcuts
00:00
1:03:36
1:03:36
 

Masterclasses in NF: Cognition and Behaviour in NF1: Phenotype and Treatment Approaches - Shruti Garg, Andre Rietman

Masterclasses in NF: Cognition and Behaviour in NF1: Phenotype and Treatment Approaches

Dr Shruti Garg, MBBS, MRCPsych, MMedSci, PhD, Royal Manchester Children’s Hospital, United Kingdom. Member of the MAB of Nerve Tumours UK

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

0 seconds of 1 hour, 2 minutes, 3 secondsVolume 90%
Press shift question mark to access a list of keyboard shortcuts
00:00
1:02:03
1:02:03
 

Masterclasses in NF: Emotional Challenges in NF1, NF2 and Schwannomatosis - Susie Henley, Thomas Pletschko & Verena Rosenmayr

Masterclasses in NF: Emotional Challenges in NF1, NF2 and Schwannomatosis

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

Thomas Pletschko, PhD, Medical University of Vienna, Austria

Verena Rosenmayr, Clinical Psychologist, Medical University of Vienna, Austria

0 seconds of 1 hour, 21 secondsVolume 90%
Press shift question mark to access a list of keyboard shortcuts
00:00
1:00:21
1:00:21
 

Masterclasses in NF: NF1 Pediatric Management - Rianne Oostenbrink

Masterclasses in NF: NF1 Pediatric Management

Rianne Oostenbrink, MD, PhD, Erasmus University Medical Center, Rotterdam, Netherlands

0 seconds of 1 hour, 8 minutes, 58 secondsVolume 90%
Press shift question mark to access a list of keyboard shortcuts
00:00
1:08:58
1:08:58
 

Masterclasses in NF: Associated Glioma in Children - the Optic Pathway and Beyond - Amedeo Azizi

Masterclasses in NF: Associated Glioma in Children - the Optic Pathway and Beyond

Amedeo Azizi, MD, PhD, Head of the Paediatric Neurofibromatosis Program and Paediatric Neuro-Oncology Program, Medical University of Vienna, Austria

0 seconds of 1 hour, 28 secondsVolume 90%
Press shift question mark to access a list of keyboard shortcuts
00:00
1:00:28
1:00:28
 

Masterclasses in NF: NF1 Orthopedic Manifestations - Eric Legius and Christophe Glorion

Masterclasses in NF: NF1 Orthopedic Manifestations

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

Christophe Glorion, MD, PhD, Department of Paediatric Orthopedic and Traumatologic Surgery, Hopital Necker-Enfants Malades, Paris, France. 

0 seconds of 58 minutes, 14 secondsVolume 90%
Press shift question mark to access a list of keyboard shortcuts
00:00
58:14
58:14
 

Masterclasses in NF: NF1 Malignant Peripheral Nerve Sheath Tumours - Rosalie Ferner and Viktor-Felix Mautner

Masterclasses in NF: NF1 Malignant Peripheral Nerve Sheath Tumours

Prof Rosalie Ferner, Consultant Neurologist and Lead Clinician for Neurofibromatosis, Guy's and St. Thomas' NHS Foundation Trust, London. Member of the MAB of Nerve Tumours UK and Trustee of Nerve Tumours UK

Viktor-Felix Mautner, MD, PhD. University Medical Centre in Hamburg-Eppendorf, Germany. Head of NF Outpatient Department

0 seconds of 55 minutes, 14 secondsVolume 90%
Press shift question mark to access a list of keyboard shortcuts
00:00
55:14
55:14
 

Masterclasses in NF - Neurofibromatosis Type 1: Cutaneous Neurofibromas - Pierre Wolkenstein and Sirkku Peltonen

Masterclasses in NF - Neurofibromatosis Type 1: Cutaneous Neurofibromas

Pierre Wolkenstein, MD, PhD. Hopital Henri-Mondor, Paris, France. Head of the Department of Dermatology

Sirkku Peltonen MD, PhD. University of Gothenberg, Sweden. Professor of Dermatology

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

0 seconds of 25 minutes, 49 secondsVolume 90%
Press shift question mark to access a list of keyboard shortcuts
00:00
25:49
25:49
 

BPNA Keynote Lecture - Prof Rosalie Ferner - Neurofibromatosis 1 in the 21st Century

‘Neurofibromatosis 1 in the 21st Century’

Keynote Lecture at the 48th British Paediatric Neurology Association Annual Scientific Meeting on 21st January 2022

Prof Rosalie Ferner, Consultant Neurologist and Lead Clinician for Neurofibromatosis, Guy's and St. Thomas' NHS Foundation Trust, London. Member of the MAB of Nerve Tumours UK and Trustee of Nerve Tumours UK