VOLUNTEERS NEEDED: Help to develop a new measurement of damage in lupus patients

[Paul_Howard]

Hi everyone

We've been contacted by an international team of researchers involving the Systemic Lupus Erythematosus International Collaborating Clinics (SLICC), the Lupus Foundation of America (LFA) and the American College of Rheumatology (ACR). They are conducting a research project to develop a new measurement of damage in Systemic Lupus Erythematosus (SLE) patients across all ages.

They are seeking volunteer involvement to ensure they will be representative and relevant to end-users.

Volunteer Criteria

The researchers are seeking 4-6 UK volunteers to assist with this project. Volunteers must be:

- A person with a diagnosis of SLE OR

- A parent of a child with SLE OR

- A carer of a person with SLE

What is expected of volunteers?

Any volunteers will initially be asked to read a Lay Summary and Participant Information Sheet for the project. If they would then like to participate, they will be asked to complete an Online Consent Form.

The programme will mainly involve online surveys and some face-to-face meetings later in the process. At each step, volunteers will be asked to reconfirm their consent to continue in the programme.

All volunteers will be listed as collaborators in the acknowledgement section of any publications.

How to get involved

If you are interested in getting involved with this project, please email [e-mail] with a short explanation of why you feel you would be well suited.

[Cas70]

Hi Paul - I have Discoid Lupus and Sjogren’s , do I qualify ? BW -

[Paul_Howard Partner LUPUS UK in reply to Cas70]

Hi Cas70 ,

I'm afraid that this is specifically for systemic lupus erythematosus (SLE) and therefore that would be needed as a diagnosis to qualify.