ASH-Report #1: Stopping CML treatment for therapy-free remission
[Translations: German - Russian]
Treatment-free remission, or stopping treatment in stable long-term deep molecular remission, has probably been the most reported topic at this year’s ASH.
The European Stop Tyrosine Kinase Inhibitor study (EURO-SKI), being the largest ongoing STOP study, has just completed recruitment of 700 participants. An interim analysis of the first 200 patients from 8 European countries with a follow-up of minimum 12 months was now presented. The study aims to define prognostic markers to increase the rate of patients in durable deep molecular response after stopping TKI treatment, evaluation of molecular monitoring procedures, and the assessment of quality of life.
ASH 2014 in San Francisco: Optimizing CML therapy
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Translations: Russian - German]
The annual ASH meeting is the most important event of the year for researchers in the field of hematology. With more than 30.000 health professionals attending the congress, it serves as the leading platform to present and discuss the latest research results as well as to meet up and discuss collaborative efforts. Some might also call it collective sleep deprivation, with meetings usually starting before sunrise and ending with PowerPoint-supported evening receptions.
Other than at the EHA congress, the ASH meeting unfortunately does not feature a patient advocacy track in the scientific programme – or at least free admission for patient advocates, which results in patient advocates only making up around 0,1% of the total audience. Roughly 35 patient advocates from all continents and across disease areas attended this 56th ASH congress in San Francisco. Amongst them, Giora Sharf and Jan Geissler are reporting some of the latest news on CML presented in presentations and on posters.
Patient-friendly summary of the ELN CML Treatment Recommendations now available in 15 languages
The CML Advocates Network, advised by medical experts, has developed a lay-friendly summary of the ELN Expert Treatment recommendations for CML.
It is now available in 16 languages: English, Arabic, Bulgarian, Chinese (traditional and simplified), Dutch, French, German, Hebrew, Italian, Polish, Portuguese, Russian, Spanish and Turkish (new: Turkish and Chinese).
See our ELN Summary here: http://www.cmladvocates.net/cmlsummary
Patient-friendly summary of the ELN CML Treatment Recommendations now available in 12 languages
The CML Advocates Network, advised by medical experts, has developed a lay-friendly summary of the ELN Expert Treatment recommendations for CML.
Thanks to our member Borislav Mihaylov from Bulgaria, it is now also available in Bulgarian as the 12th language (English, Arabic, Bulgarian, Dutch, French, German, Hebrew, Italian, Polish, Portuguese, Russian and Spanish).
See our ELN Summary here: http://www.cmladvocates.net/cmlsummary
The CML Advocates Network's Clinical Trial Registry now lists six new studies
About a year ago, the CML Advocates Network set up an inofficial clinical trial registry to give CML patients easy access to information on ongoing CML trials: http://www.cmladvocates.net/cmltrials. With the continued input from patients, academic institutions and pharmaceutical companies, who keep submitting up-to-date trial information, the registry has grown and turned into a great source of information. The trial registry contains not only a short summary of the trial, but also (if available) the informed consent documents for patients, a list of the study centers, as well as weblinks to clinicaltrials.gov or the EU Clinical Trials Register. Since the beginning of September 2014 alone, six new studies have been added, and 20 clinical trials are listed in total.
EHA 2014: Generics in haematology, young people in old people’s diseases, access to medicines, fair pricing: Key concerns of patients and clinicians tackled in the EHA Advocacy Track 2014
A stiffer regulatory environment for clinical research, heavy cost pressure on healthcare systems, as well as the advent of the Internet are changing the dynamics between healthcare providers, patients, policy makers and their healthcare system. Complementing the scientific programme of the European Hematology Association (EHA) Congress 2014, EHA has put patients at the centre by again offering a full-day Advocacy Track. It tackled sensitive issues like generics in haematology, young patients with old people’s diseases, as well as access to medicines and fair pricing. The sessions on 13 June 2014, supported by the CML Advocates Network and Thalassaemia International Foundation, were very popular not only for hematologists, but also nurses, researchers and patient advocates attended the various sessions.
More CML Educational Videos available
Two new CML Educational Videos available: Testing & Monitoring and Adherence video in Dutch language
The "CML Education and Science Section" is constantly being expanded. Two new videos in Dutch language are available now. Here is the full list of currently available videos in multiple languages:
- What you need to know about adherence to therapy (now also available in Dutch!)
- What you need to know about side effects and how to manage them
- What you need to know about testing and monitoring (now also available in Dutch!)
New CML Educational Video available: Testing & Monitoring video in Czech language
Facilitating access to information and providing educational material to patients is key to patient advocacy groups. In 2012, a European workgroup of patient advocacy groups and CML experts started to develop and produce a series of educational videos on CML, supported by Bristol-Myers Squibb. Videos are available in several languages. Currently there are three videos available:
- What you need to know about adherence to therapy
- What you need to know about side effects and how to manage them
- What you need to know about testing and monitoring (as of today, also available in Czech language!)
On World CML Day 9/22, leukemia patients worldwide unite to address the courage and hope required to live with chronic myeloid leukemia, and call for access to best available treatment and care for all patients
Now available: Our patient-friendly summary of the ELN CML Treatment Recommendations!
The CML Advocates Network has published the updated patient-friendly summary of the "2013 European LeukemiaNet recommendations for the management of CML. It is made available in English, French, Italian, German, Hebrew, Russian, Polish, Spanish, Portuguese, Arabic and Serbian (as a start). More languages might follow.
New CML Educational Video available: Adherence video in Czech language
Facilitating access to information and providing educational material to patients is key to patient advocacy groups. In 2012, a European workgroup of patient advocacy groups and CML experts started to develop and produce a series of educational videos on CML, supported by Bristol-Myers Squibb. Videos are available in several languages. Currently there are three videos available:
- What you need to know about adherence to therapy (as of today, also available in Czech language!)
- What you need to know about side effects and how to manage them
- What you need to know about testing and monitoring
