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Looking For Volunteers

22 January 2019

Patient/Parent focus group for Global Patient Registry for nGD – are you interested in taking part?

Last week the IGA announced the launch of Phase 1 of the development of a Global Patient Registry for neuronopathic Gaucher Disease (nGD) in order to increase disease knowledge and understanding, but also to develop new outcome measures and support emerging drugs/treatments in the pipeline.

One of the key areas is patient engagement and we would like to ask nGD patients and parents of nGD patients, type 2 and 3 and those who sadly passed away if they would like to be part of this exciting project and take part in either a two hour online patient focus group (terms of reference available) or a one-hour in-depth interview.

The aim of both the focus group and the in-depth interview is to understand what outcomes are important to patients and parents themselves, and what symptoms have highest disease burden on day-to-day activity.

The names of all participants will be kept completely confidentially and not shared with anyone outside the group.

A £75 amazon voucher will be given to each participant as a thank you gesture for taking part.

The patient focus group will take place on the 20th March and the in depth interviews the week of the 15th April.

If you are interested in learning more please DM the IGA or email tanya@gaucheralliance.org