UK 'OK to ask' patient empowerment campaign encourages patients to take part in research & FLAIR 1st line CLL trial commences + others.

[HAIRBEAR_UK]

Never has there been a time when so many novel therapies are available in clinical trial in the UK to treat CLL.

"The National Institute for Health Research (NIHR) launched a campaign in May this year entitled "OK to Ask", encouraging patients to ask their doctor about clinical-research opportunities and whether taking part in a research study might be the right step for them as part of their care programme.

We want patients to know that research is happening in the NHS and to enable them to have access to information about local opportunities and to feel empowered to speak to their doctors about the possibilities, commented the NIHRs Simon Denegri. This campaign is about getting that conversation going, and letting patients know that they don't have to wait to be approached by their doctor or nurse."

If you are approaching treatment it's OK to Ask your doctor about a clinical trial.

nihr.ac.uk/newsroom/the-nih...

ct-toolkit.ac.uk/news/its-o...

You may interested to know that the latest CLL trial, FLAIR, opened last week in Leeds and we should start to see this opening at other hospitals around the UK in the next few weeks.

FLAIR: Front-Line therapy in CLL: Assessment of Ibrutinib + Rituximab to asses whether IR is superior to FCR in terms of progression-free survival

Participants will be randomised on a 1:1 basis to receive either FCR or Ibrutinib+R.

Planned Sample Size: 754; UK Sample Size: 754

ukctg.nihr.ac.uk/trialdetai...

This is the latest of the new kinase inhibitor trials that are now open. Others include

IcICLLe: (recently opened) Ibrutinib

ukctg.nihr.ac.uk/trialdetai... layman summary cancerresearchuk.org/cancer...

RIAltO (new protocol amendment to include Idelalisib). CALiBRe (Idelalisib) is another

kinase inhibitor trial which is still in set-up but is due to open this year.

For other UK CLL trials info: NCRI study group portfolio map PDF

csg.ncri.org.uk/wp-content/... UK Clinical trials gateway: ukctg.nihr.ac.uk/search?que...

If you are approaching treatment and interested in a trial, now would be a good time to

chase this up with your doctor.

[MartyR]

Great Article -->> Hairbear,

I can fully support the sentiment --- if you don't ask -- you don't get - after my successful Idelaslib + B + R trial - see my posts.

However, it is still very important to do research on your own and if possible ask for a second opinion as to whether the Clinical Trial is "right for YOU" AND what other options are available.

Furthermore, sites like this award-winning community can offer support and advice.

Its great so see so many more Clinical Trials starting but why with such high participant numbers? (50% of 754 sufferers are to endure FCR!)

Maybe I am talking out of turn BUT UK trials are so far behind USA, Australia, Etc Etc (FDA Approval of Ibrutinib in Feb 2014.) that surely NIHR can access the earlier Trial Data?

Marty