EUnetHTA deems patient involvement very important in the production of Joint Assessment reports. We recognise that patients and those who support them have unique knowledge about what it is like to live with a specific disease or medical condition. We believe patient groups can help us understand patients’ unique perspectives by collecting and presenting patients’ and carers/care-givers’ views and experiences by engaging with a wide range of patients. They can describe advantages and disadvantages of medicinal treatments based on patients’ experiences and what patients value from a new treatment.
EUnetHTA recently started a new Joint Assessment on a medicinal product for the treatment of relapsed or refractory Acute Myeloid Leukaemia (AML) with an isocitrate dehydrogenase 2 (IDH2) mutation.
For this specific assessment on a medicinal product for AML, an ‘open call for patient group submission‘ is used. We are seeking for European and national patient organisations to provide an organisational perspective on the questions in English. In all parts of this form the term “patient” refers to anyone living with, or who has lived with, the condition for which the new medicine is indicated. The information provided will inform the scope of the assessment, e.g. on patient relevant outcomes or possible neglected outcomes, as well as on the burden of disease.
The questions in this call are taken from the HTAi questionnaire template. For more information on the development of the HTAi questionnaire template please see their website.
EUnetHTA strives to be transparent in the information used and at the same time we recognise that completing this form requires substantial resources. Therefore, we commit ourselves to making all patient submissions publicly available at our webpage, at the timing of publication of the project plan for this assessment. In due course, this can be found here. Of course, we will anonymise the data from individual patients prior to publication. Furthermore, our Joint Assessment report will document how the information from patients was considered in developing the scope of our EUnetHTA Joint Assessment.
If you are interested in submitting information, please go to the questionnaire below and submit your input before February 22nd, 16:00PM CET.
Please see below for further guidance on how to complete this questionnaire. If you have any questions when completing this form, please contact EUnetHTA pharmaceutical Joint Assessment co-lead partner, Zorginstituut Nederland at WP4_Pharmaceuticals@zinl.nl
Many thanks for your valuable input!
 We are working on translation the questionnaire to national languages, so that also individual patients can submit information. Unfortunately, this will not be possible for this specific assessment on a medical device for high-risk soft tissue sarcoma.
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