Author Topic: Janssen seeking volunteers with AL amyloidosis and their carers  (Read 687 times)

Miriam Vered

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Sandra Quinn, the Health Services Research Manager at Myeloma UK has asked me to post the following message here:
We have been approached by Janssen, the pharmaceuticals company, to assist them to recruit AL amyloidosis patients and their carers to a newly forming insights board. It is planned to take place through video conferencing and will be facilitated by an external independent healthcare agency that is funded by Janssen. The key objectives are as follows:
 
•   Elicit the opinion of AL amyloidosis patients and carers in regard to their experience with AL amyloidosis, from onset of symptoms to diagnosis, burden of AL amyloidosis on the quality of life (physical and emotional) of patients and management of AL amyloidosis.
•   Capture and better understand the unmet needs of patients and carers
•   Elicit the opinion of AL amyloidosis patients and carers in regard to their preferences for treatment and management of their AL amyloidosis
•   Discuss the upcoming NICE appraisal for Daratumumab (Darzlaex®) in combination with cyclophosphamide, bortezomib (Velcade®) and dexamethasone for newly diagnosed AL amyloidosis patients
 
If patients or their carers are interested in joining the insights board, please contact the Research Team at Myeloma UK via the following email address research@myeloma.org.uk
 

Daffydak

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  • Reason for joining: Recently diagnosed with AML Al
  • Diagnosed: 19/06/2019
Re: Janssen seeking volunteers with AL amyloidosis and their carers
« Reply #1 on: June 13, 2021, 08:17:46 am »
I have Al Amyloidosis and would be prepared to join in a clinical research on the subject.

I was diagnosed two years ago and currently am treatment free

Daffydak

Miriam Vered

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Re: Janssen seeking volunteers with AL amyloidosis and their carers
« Reply #2 on: June 13, 2021, 08:56:54 am »
You should send an email to the researchers at research@myeloma.org.uk


Good luck!