We need your feedback on our summary of the ELN treatment recommendations!
To improve the information available to patients, in 2001 an international workgroup of CML patient organisations and experts developed a patient-friendly summary of the European LeukemiaNet’s (ELN) 2009 CML recommendations for the management of Chronic Myeloid Leukemia. The patient-friendly summary was distributed by CML patient organizations both online and in print. It can be accessed here: http://www.cmladvocates.net/education/eln-recommendations
In 2013, the ELN published updates to the CML treatment recommendations. Now, to make sure that patients have access to the recent update, the same workgroup is planning to update the patient-friendly summary. In order to ensure we are meeting the needs of the CML community, please share your experience with the existing ELN patient-friendly summary and tell us how you’d like to see the new summary improved in 2014.
If you have used the ELN summary before, please help us and respond to our survey by 30 January 2013 here: https://www.surveymonkey.com/s/ELNPatient-FriendlySurvey
Understanding CML terminology - our new CML glossary
We have now launched the CML glossary, which explains terms that are commonly used in the context of CML, specifically in medical publications. You can access the glossary here: http://www.cmladvocates.net/glossary
All terms of the glossary are automatically being highlighted in articles all across the CML Advocates Network website, so when we publish e.g. our ASH reports, all terms contained in the glossary are explained by just moving your mouse on all terms marked with a fine dotted line.
We will be extending the glossary over the next couple of weeks, but as a community-run glossary, we appreciate your help! If you would like to suggest a glossary term that we've not covered so far, please suggest it here: http://www.cmladvocates.net/newglossaryterm. The glossary is released under Creative Commons License, so feel free to re-use.
Inofficial CML trial registry launched
Patients wishing to participate in clinical studies often look for a central source of information where they can find easy-to-understand facts on ongoing trials. Existing official registers like clinicaltrials.gov or clinicaltrialsregister.eu are usually quite difficult to understand and also do not contain relevant links to patient information, e.g. to the informed consent document, trial websites etc.
To improve the situation on availability of CML trials for patients, the CML Advocates Network is now hosting an inofficial database of current academic and industry-sponsored CML trials. The trial registry is run by patients for patients and is set up as a dynamic register in which data are updated on an ongoing basis. You can access the trial registry here: http://www.cmladvocates.net/cmltrials. For more general information on clinical trials, read „What are clinical trials?“ at http://www.cmladvocates.net/abouttrials.
However only some trials are listed in our register today. We need your help to register all ongoing trials and keep the information up to date. Do you know of any study that is not yet listed here that is currenty recruiting CML patients? Please let us know by using this form: http://www.cmladvocates.net/trialsubmit.
Welcome, Alliance of Chronic Myeloid Leukemia Patients of Georgia - now 83 patient organisations from 65 countries in the CML Advocates Network
We are delighted to welcome "The Alliance of Chronic Myeloid Leukemia Patients of Georgia" as a member of the CML Advocates Network. The network now connects 83 organisations from 65 countries across all continents. See the list of CML groups in the Network on our world map.
ASH Report #2: First-line trial updates, STOP trials, early switching, comorbidities, side effects
| In this second report from the annual meeting of the American Society of Hematology (ASH), we would like to cover some of the long-term follow-up data on first-line CML therapies: the 5-year update on the Nilotinib first-line trial ENESTnd, as well as the 4-year update on the Dasatinib first-line trial DASISION. The results of all three approved first-line TKIs Imatinib, Nilotinib and Dasatinib continue to be excellent when applied in first line, with low rates of progression, increasing rates of deep molecular responses. For those with resistance and intolerance against these three TKIs, at least two additional TKIs are becoming available in an increasing number of countries. CML has turned from a life-threatening disease into a chronic condition for most patients with a near-normal life expectancy. Given research conferences mostly cover unresolved topics, this year's CML sessions at ASH seemed to focus on mainly three topics: how safe and successful is stopping all therapy in deep molecular response, how do we manage serious side effects in some patients, and what role do pre-existing other diseases (e.g. cardiovascular risks that are more frequently present in elderly patients) play when we choose TKI therapy? This (lay) report focuses on ASH presentations that focused on these topics. |
Also in: |
1 comments
ASH Education Session: "An Embarrassment of Riches"
|
|
|
