Priorities in symptoms management

                                   

 

 

 

Dear Participant,

When addressing KD's symptoms, clinical staff largely rely on knowledge borrowed from other specialities and on the wealth of experience of people living with KD made available via patient groups, blogs, and forums.

With this brief survey we aim to:

  1. Highlight how people living with Kennedy's disease currently manage the most burdensome symptoms/problems.
  2. Ask the KD community to identify and prioritize specific interventions for managing symptoms, for researchers to focus upon. In the first instance, this might be done by reviewing the existing literature and, when resources allow it, through multicentre clinical trials.

We would be grateful if you could complete this anonymous questionnaire by the 20th of September 2020. It will take only a few minutes, but feel free to contribute to this discussion by adding details and/or opinions in the free text sections. Results will be presented at the Kennedy's Disease Association conference on the 14th of October.

Many thanks for your time and contribution.

The KD-A & KD team @ UCL