Clinic and National Register
THE NATIONAL KENNEDY’S DISEASE CLINIC
The National Kennedy’s Disease Clinic is based at the National Hospital for Neurology and Neurosurgery in London. The clinic provides highly specialised multidisciplinary input, including neurology, physiotherapy, specialist nursing, and advice on equipment and wheelchairs. It focuses on the comprehensive management of Kennedy’s Disease, addressing motor symptoms, bulbar dysfunction, and quality of life.
The team offers personalised care tailored to individual needs, including guidance on condition management, genetic counselling, physical activity, and monitoring of disease progression. The clinic also serves as a hub for clinical research, offering patients opportunities to participate in studies aimed at advancing the understanding and treatment of Kennedy’s Disease. This dual focus on both clinical and research assessment ensures that patients receive thorough, up-to-date care while also contributing to a better understanding of Kennedy’s Disease and the development of potential new treatments.
The National Kennedy’s Disease Clinic team consists of the following healthcare professionals:
Consultant Neurologists: Professor Pietro Fratta, Dr Dipa Jayaseelan, Professor Carlo Rinaldi
Clinical Research Nurse: Luca Zampedri
Clinical Specialist Physiotherapist: Dr Louie Lee
Wheelchair Specialist OT: Lynne Hills
Although the clinic is based in London, patients can access the services of the National Kennedy’s Disease Clinic remotely. Consultations with the Consultant Neurologists and Clinical Specialist Physiotherapist can be conducted via video or telephone call. The team can also work collaboratively with local neurology and Allied Health Professionals, offering expert guidance on the management of Kennedy’s Disease. While the clinic primarily serves male patients, female carriers can also be seen when necessary.
Your GP or Neurologist can refer you to this clinic using the following contact information:
Telephone: +44 (0)20 3448 8030
Email: uclh.enquiry.neuromuscular@nhs.net
Referral address:
Queen Square Centre for Neuromuscular disease
National Hospital for Neurology and Neurosurgery
Queen Square
Box 102
London, WC1N 3BG
Note: people living in Wales, Scotland, and Northern Ireland may need approval from their national health authority to access the clinic.
THE KENNEDY'S DISEASE NATIONAL REGISTER
The Kennedy’s Disease National Register is a research database held and managed at the National Kennedy’s Disease Clinic. Its primary purpose is to facilitate research into the disorder, characterise diagnostic features, collect data on the frequency of the disease in the United Kingdom, and aid the design and recruitment in upcoming clinical trials. People on the register receive updates on conferences and progresses in the field via a newsletter. Data from the national register is shared and merged with international registries, supporting the global effort to better understand Kennedy’s Disease, identify trends, and collaborate on research initiatives, including the development of new treatments and therapies. This collective approach enhances the impact of research and fosters a worldwide network of knowledge and resources dedicated to the condition.
To receive further information on how to join you can contact the clinical research team
at uclh.kdregister@nhs.net or Telephone: +44 (0)20 3108 7507.
Ongoing Clinical Studies
The team at UCL, in collaboration with Dr Andrea Malaspina at Barts and the London, are collecting blood samples from KD patients at many timepoints during disease. This will allow researchers to investigate molecules in the blood that may help to assess the progression of disease.