Dr Pietro Fratta and Prof Michael Hanna will run a Kennedy’s Disease clinic at the National Hospital for Neurology and Neurosurgery in London. Your GP or Neurologist can refer you to this clinic by writing to Dr Fratta;
MRC Centre for Neuromuscular Disorders – The National Hospital for Neurology & Neurosurgery
Box No: 17
Queen Square
London
WC1N 3BG
If you have any questions for the team at UCL you can contact Jan Clarke on 0203 448 3517 or email her on the following address, jan.clarke1@nhs.net. Referrals can also be emailed directly to uclh.kdregister@nhs.net.
The National Registry
There is now a national register of people with Kennedy’s disease run at the National Hospital for Neurology and Neurosurgery by Professor Michael Hanna and Dr Pietro Fratta.
Joining the register will mean that you can be contacted by the National Hospital for Neurology and Neurosurgery and kept up to date with the latest information about the disease. They will also be able to contact you about new studies, drug trials and other initiatives for people with Kennedy’s disease.
You will not be added to the register automatically. You can register by contacting directly the team running the register at the National Hospital for Neurology and Neurosurgery by emailing uclh.kdregister@nhs.net or by calling 0203 108 7507. You can also ask your neurologist to inform the British Neurological Surveillance Unit (BNSU) at the Association of British Neurologists.
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 to investigate molecules in the blood that may help to assess the progression of disease.