Collecting information about every person living with Kennedy’s Disease in the United Kingdom
Kennedy’s Disease is a rare hereditary disorder of the motor neurones, caused by a genetic mutation. It predominantly affects men. Women carrying the genetic mutation may display very mild symptoms. Kennedy's Disease presents differently from person to person. It causes muscle weakness and a variety of symptoms linked to reduced sensitivity to the male hormone testosterone.
You can read more about Kennedy's Disease on our Kennedy's Disease webpage.
The Kennedy's Disease Register is held at the Centre for Neuromuscular Disease at the National Hospital for Neurology and Neurosurgery at University College London. Its aim is to try and trace everyone in the UK who has Kennedy’s Disease or carries the genetic mutation which causes Kennedy's Disease.
How will this study help people with and affected by Kennedy's Disease now and/or in the future?
The Kennedy’s Disease Register aims to facilitate research into this rare condition, and aid in the design of and recruitment to new and upcoming clinical trials. It also aims to characterise key features of the disease which may help to improve diagnosis and to collect data on how many people are living with Kennedy's Disease in the UK.
Taking Part
What does taking part involve?
People who enrol in the Kennedy’s Disease Register will be asked to share information on their condition. This will be done via questionnaires and tests, which can be done either in person at the Kennedy’s Disease clinical and research centre at University College London, or on the phone.
Information will be treated with strict confidentiality and held on a secure database at University College London Hospitals.
Who can take part?
Anyone who is living with Kennedy's Disease or who has a confirmed mutation in the gene causing Kennedy's Disease.
How can I take part?
For further information or if you would like to join the register, contact the clinical research team at uclh.kdregister@nhs.net or by telephone at +44 (0)20 3108 7507.
Study location
UK-wide
Funding
NA