For Aussies, an update on the CLL PEEK (Personal, Experience, Expectations, Knowledge) Survey, which is still open!

[AussieNeil]

Further to my previous post: healthunlocked.com/cllsuppo... here's an update from the Centre for Community-Driven Research CEO:-

"Thanks to everyone that has participated in the Australian CLL patient voice study so far. Registration is still open and we really need your help so that the CLL community can have their collective say about future treatment, care, information and support.

30 people have registered for the study which is amazing and we only need 20 more to get to the finish line. The study is open to anyone diagnosed with CLL in Australia - whether on active treatment or 'watch and wait'.

To register, email [e-mail] or go to cc-dr.org/peek/register "

We have seen this week what advocacy can achieve, with Acalabrutinib/Calquence being approved for Australian CLL patients: healthunlocked.com/cllsuppo...

Studies like this PEEK survey provide advocates for improved treatments with convincing evidence of why better treatments are needed to reduce the impact of living with CLL, so we can gain access to improved treatments and services to improve our quality of life and live out a normal lifespan. If you haven't already done so, please add your voice. Email [e-mail] or go to cc-dr.org/peek/register

This is an open/unlocked post.

Neil

[Smakwater]

Neil,

For those reading this, I looked at the registration, and it require that one reside in Australia.

So, for those of you in Australia that are reading, Please go for it.

For any who read this that have opportunity to participate in surveys and studies, please do so. In my view it is the most important aspect of self advocacy. Without the patient, research observation is limited to in vitro and animal testing. Patient participation in data gathering provides the base line measure that drives the dynamic in research.

PEEK only needs 20 more registrants. Let's keep it moving,

Note that the Australians are highly responsible for the success of Venetoclax!

Thanks Aussie Registrants,

JM

[AussieNeil Partner Administrator]

Here's a brief overview of the survey outcomes from Catherine Holliday, the CEO Centre for Community-Driven Research:

- Just over half of all participants so far are women

- Most of the participants so far are aged 55 to 64

- A third of all participants come from regional and remote locations

Clinical trials

- Just over half of all participants so far have discussed clinical trials with their doctor

- About 1 in 10 people have taken part in a clinical trial

- About 9 in 10 people would take part in a clinical trial that is suitable for them

Information given most by healthcare professionals

- Treatment options

- Disease management

Information given least by healthcare professionals

- Complementary therapies

- Diet information