Aussies, please consider enrolling in this study into the personal impact of CLL and help our world wide CLL/SLL community

[AussieNeil]

Australians diagnosed with chronic lymphocytic leukaemia/small lymphocytic lymphoma (CLL/SLL), whether in watch and wait or in treatment:-

- Are you ready to have your say on the support, care & information patients need?

- Are you ready for your experience to help others in the future?

- Are you ready to talk about those who made a difference to your care?

- Are you ready to have your voice heard?

The Centre for Community-Driven Research (CC-DR) welcomes you to share your experiences with CLL/SLL and turn this into evidence for advocacy, in Australia and overseas. The study, sponsored by AstraZeneca, will include an online questionnaire that will take approximately 20 – 30 minutes to complete, as well as a structured interview by telephone that will take approximately 45 minutes. Items covered will include your experience with symptoms, diagnosis, treatment (if any), support and care by family, friends, the health system and charities, levels of anxiety, expectations of future treatment and the treatment decision making process.

Study Register page (including a link to Frequently Asked Questions): cc-dr.org/peek/register/202... or email [e-mail]

From the 2 minute introductory video: youtu.be/SLgvJrMNa2g(Not working as expected?)

How is my information protected?

- The information we collect is anonymous and we never share any data with anyone else.

How is the information used?

- The information is placed in a public report and used to drive decisions about future health service, research and policy decisions, creating a more person-centred health sector.

Will I be able to see the results?

- Of course! CCDR will hold an online session to go through the results once the report is finished and the report will be public for everyone to see.

We can’t do this without you. Every experience counts. Every voice matters.

This survey is the first step in the Personal Experience Expectations and Knowledge (PEEK) Program, which aims to build a global repository of personal experience data, per these examples for other conditions: cc-dr.org/peek/repository

I've added my voice and I hope other Australians will also share their experiences, so that we will soon see a repository addition for patients with CLL/SLL to help all of us live better with this condition, wherever we may live.

This is an unlocked post, please feel free to share it with other Australians with CLL/SLL.

Neil

[PaulaS Volunteer]

Wonderful photo, Neil.

If I was an Aussie I would add my voice, but sadly I'm not. Hopefully many other Aussies will.

Paula

[Sushibruno in reply to PaulaS]

I would do the same if I was an Aussie🙂.

[CLLerinOz Administrator Volunteer]

Have already participated and thoroughly recommend it to all Aussie CLL patients.

[morepork]

If I wasn't on the other side of the Tasman Sea I' d have joined in too.😊

[AussieNeil Administrator]

Thanks to my fellow Australians who have enrolled in this survey, but many more are needed. Please take this opportunity to help yourself, other Australians and indeed others with CLL wherever they may live. The survey results are published on the CC-DR website and freely available for CLL advocacy efforts world wide.

Neil

[CLLerinOz Administrator Volunteer]

Just giving this a bump to help bring it up the newsfeed in the hope that more of our Australian members will see it and get on board to participate in this survey.

[AussieNeil Administrator]

We are slowly making our way to the target of 100 Aussie CLL experiences. Please add yours! Visit cc-dr.org/peek/register/202... or email [e-mail]

Thanks!

Neil and those with CLL the world over

[tapda01]

Thanks Neil... just registered...

David

[AussieNeil Administrator]

Thank you to all who have agreed to contribute to this Australian study. At the end of last week, 44 Australians were participating, a very encouraging result. Can we make the original goal of 100 participants? Over to you!

[AussieNeil Administrator]

Thank you to all Australians who have responded. We've just made 50 participants! A reminder that this survey is now open to carers and family members to add your voice. healthunlocked.com/cllsuppo... Can we achieve 100?

To register, email [e-mail] or go to cc-dr.org/peek/register/202...

Again, thank you!

Neil