As an international network of CLL patient support groups, the CLL Advocates Network has been working in HARMONY, the Alliance for Big Data in Hematology, and thus ensured there is patient participation in CLL research, healthcare development and data harmonisation.
One of HARMONY´s aims is to increase consistency in future clinical trials, allowing for the results to be compared and combined. To do this, clinical trials need to use consistent core outcomes. Therefore, HARMONY researchers are running several Delphi Surveys to compile Core Outcome Sets (COS) for specific blood cancers/Hematologic Malignancies.
Today on World Cancer Day 2021 the first of the CLL Delphi surveys has been launched to enable different stakeholders to create consensus on the most relevant outcome measures for CLL in Core Outcome Sets. Patients, clinicians, EFPIA (the European Federation of Pharmaceutical industries and associations) members and regulators are invited to participate. As the list will be defined by a broad group of stakeholders, consensus will be a cumulative result of all together. To ensure the patient experience is captured and prioritises what QOL and PRO measures are relevant to patients, patient participation is vital!
Therefore PLEASE ask the CLL patients in your group to complete the survey to make sure there is appropriate representation. The more patients become involved to rate the outcome measures for CLL based on their own experience, the better!
More information on the survey and the link to access it can be found here.
Thank you for sharing the link and encouraging your membership to take the survey!
Are there issues that have not been considered in the survey? Are all topics relevant to patients covered by the survey? Please contact us at info@clladvocates.net if you feel more needs to be added to the survey. We will be happy to collect your comments and feed back to HARMONY – all this with the aim to make this most relevant to patients.
Further information on the HARMONY Alliance and explanatory documentation specifically developed for patients and their carers can be found hereunder:
• The FAQ section on the HARMONY Alliance Website
• Three videos explaining the HARMONY Delphi surveys
• A factsheet on how the CLL Delphi study works
• A video explaining what core outcome sets are
• A factsheet summarizing what a core outcome set is and why we need your help