Share Your Thoughts on Clinical Trials- Take Our Survey

[tclementi]

Patient Power’s Andrew Schorr will be speaking again before another major audience – this time in Boston on July 21st to heads of research at pharmaceutical companies and government officials. They know clinical trial participation is very low and they want to hear from patients on how they can help turn this around. According to the National Cancer Institute, clinical trials are "research studies that involve people to find new ways to improve treatments, prevent cancer, manager cancer symptoms and side effects and the quality of life for cancer patients". Andrew needs your perspective on clinical trials. So please take a few minutes to share your view. Your personal information is always kept strictly confidential. Thanks! surveygizmo.com/s3/2897038/...

[Bubnojay]

Hi tclementi

This being a cll community of which you appear to be an administrator, be good if you would share your cll journey with us

Hoping you are coping

Bubnjay1

[tclementi in reply to Bubnojay]

Hi Bubnjay, I am not a patient but a patient advocate. I am an admin for Patient Power's CLL, MPN and Myeloma communities. But our founder Andrew Schorr has both CLL and MPN and is coping well.

[Aklambert]

I'll only be 2 days into the Flair trial, so may not be of much use.

[AussieNeil Administrator in reply to Aklambert]

This short survey is still relevant to those looking into possible treatments and what would make them consider joining a clinical trial. I'd say your experience would be most relevant given you've recently gone through that experience!

[tclementi in reply to AussieNeil]

Yes please, we are interested in knowing how or why you chose to enroll the clinical trial too!

[Oleboyredw-uk]

Hi Bubnjay1,

As far as the CLLSA group on HeathUnlocked is concerned I think there are only two admins, AussieNeal and Hairbear.

I think the link takes you elsewhere, where tclementi is an admin.

Yes, I think I worked it out, click on tclementi, so you will see registration details and list of posts created by tclementi. If you then select the first one (there is more than one with the same subject) you will be taken to the Myloma America From Patient Power group where tclementi is an admin.

rob

[tclementi in reply to Oleboyredw-uk]

Hi Rob, Thanks for clarifying! I am an admin for the CLL, MPN and Myeloma groups from Patient Power. Not a patient myself although I have family members who are and so I consider myself a patient advocate. Patient Power loves the CLLSA and thanks them for this great community!

[Bubnojay in reply to Oleboyredw-uk]

That's what I thought Rob, but wanted it made clear that tclementi is an administrator for Patient Power and not a cll patient or carer.

Bubnjay1