Volunteer needed for NICE Scientific Advice projects - deadline of 19th November

[Paul_Howard]

Hi everyone,

I have received a request from NICE. They are currently seeking adults with lived experience who have moderate to severe systemic lupus erythematosus (SLE) with persistent disease despite standard background therapy.

These volunteers are wanted for Scientific Advice (SA) projects. Scientific Advice is the process whereby pharmaceutical companies ask NICE to provide advice early on in a drug’s development about trial design. NICE advise on the company’s plans for generating evidence for their product to help them meet the requirements for later evaluation (the technology appraisal).

Confidentiality

Any volunteers for this project will be subject to a confidentiality agreement.

Key Dates, what’s involved and time commitment for the patient experts

•Cut off for volunteering is Friday 19 November.

•Preferably during w/c 22 November those involved will participate in a pre-meeting briefing call with colleagues from the Scientific Advice team (date to be arranged to suit experts and colleagues in SA team).

•Wednesday 8 December (from 12:30pm to 4pm via Zoom) patient experts to attend a meeting (details of the meeting are included below and in the attached).

Patient experts will be asked to

1.complete initial paperwork consisting of a confidentiality form, a contract and a waiver of rights form

2.read documentation (called a briefing book) ahead of a briefing call and the main virtual meeting (the briefing book contains information about the trial’s proposals and can be up to 100 pages long. It is not expected that the patient expert should read or understand all of it and any questions can be answered during the pre-meeting call)

3.participate in a pre-meeting briefing call

4.attend the main virtual (Zoom) meeting on Wednesday 8 December (from 12:30pm to 4pm)

5.review and comment on the report that is produced afterwards.

*A fee (honorarium) will be provided to cover time spent on a pre-call, the meeting, and comments on the report. A member of the Scientific Advice team will be in touch with the patient expert to arrange all the practical details and paperwork.*

If you are interested in this opportunity, please email [e-mail] with a short background of your experiences of lupus, treatments and why you would like to be involved.

[kjsfm]

Hello Paul

I have emailed you with regard to this.

Many thanks