CLL Tracker - Patient Data

[RobertCLL]

In 2011 CLL Tracker clltracker.co.uk was introduced to share patient specific data on their CLL experiences. This international website provides detailed information, in graphical form, relating to:

• Demographics

• Diagnosis and staging

• Prognostic markers

• Blood results

• Treatments

• Complications of treatments

As a result of changes in data privacy and the ever changing landscape of CLL, the website has been redesigned to reflect these developments. I would like to invite you to submit your CLL/journey details. The 2019 survey can be found at the following address: clltracker.co.uk/survey/

I would assure everyone that the data submitted will not, under any circumstances, be passed onto any 3rd party. The information collated is only for the benefit of you!

For this 2019 survey to be successful, it will require the investment of your time to complete the questionnaire (a few minutes if you have not received treatment, and maybe only 10 minutes if you have received a number of treatments).

The website can be found at the following address: clltracker.co.uk

I would add that I am a CLL patient with 19 years into my journey.

Regards

Robert

UK, Bournemouth. Dx May 2000. Age 63.

2002 Oral Fludarabine.

June 04 and Jan 05 4 weeks of Rituxan.

Oct 05/Feb 06 monthly Rituxan and Chlorambucil.

July/Dec 08 RFC.

June 2012 Bendamustine and Ofatumumab, but changed to Rituxan.

2014 to date IVIG.

Jan 2017 Ibrutinib.

Trisomy 12 (NOTCH 1 and SF3B1 unmutated), IgVH mutated, ZAP70 -ve, CD38 -ve.

[CopJen-]

Hi, I am in Australia so would it be viable for me to do this survey?

[RobertCLL]

CopJen

This is an international survey so your information would be of value.

[AdrianUK]

This is a great initiative. Would be good to take it a step further. We could look at for example what infection risk control procedures people are applying then ask the same people to confirm how many infections they had over the winter months and turn it into something that could be published and might even suggest which techniques make a difference. Etc.

[RobertCLL]

AdrianUK

Thank you.

There is so much I could do with the survey, but I have to be mindful of the number of questions asked and how long it takes to complete the survey.

[Jm954 Administrator]

RobertCLL ,

did you get my message to you regarding this tracker?

Jackie

[RobertCLL]

Once again thank you for allowing the survey.

Robert

[RobertCLL]

Thank you to everyone that has participated in this year’s survey, the results from the first 104 patients are now on the website at clltracker.co.uk/results2019/

My goal would be to obtain the experiences from over 200 CLL’ers, so if you have not had the opportunity to participate your information would be very much appreciated.

Regards

Robert