We are pleased to announce our latest news to you.
Inspiration for 2020: The story of the OMERACT working group and patient involvement in creating patient reported outcomes
Myositis or Idiopathic inflammatory myopathy (IIM) is a group of very rare diseases characterized by inflammation of the skeletal muscles, leading to muscle wasting, weakness and reduced quality of life. Heart and lungs may also be affected and this may lead to a shortened life expectancy. The OMERACT (Outcome Measures in Rheumatology) myositis working group coordinated patient input into the development of improved outcome measures for IIM by conducting an international survey with patients, caregivers and healthcare professionals to identify which outcomes with regard to quality of life matter most.
Nothing about patients without patients. This is how admedicum works. And so we also produced a new video that deals with the decision-making situation of patients who can participate in a clinical study.
LS Academy and admedicum Business for Patients are pleased to invite you to the Pegasus Networking Reception on Monday 2 March from 18.00-20.00. This event will feature an interactive parliamentary-style debate moderated by Paola Kruger, EUPATI Italy, and Roger Legtenberg, Upstrong, former CEO of PSR Clinical Research, where participants will be guided through a lively debate of current issues in patient engagement in research and development.
We are delighted to announce Roger Legtenberg as a new independent Expert Partner to our team! Roger, who runs his own consultant firm Upstrong and who is based in the Netherlands, brings significant expertise in regard to clinical development and operations, especially in the rare diseases, and the involvement of patients in the design and recruitment of clinical trials.
An indispensable prerequisite for the implementation of patient engagement within the company is to know first of all what patients want. This includes their needs, desires, priorities and preferences. This is increasingly recognized in the pharmaceutical industry. In major publications on collaboration with patients, the European (EFPIA) and many national industry associations as e.g. the German Pharmaceutical Industry Association (BPI) or the Association of the British Pharmaceutical Industry (ABPI) have assigned great importance to this question.
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We gladly answer your questions concerning the contribution of admedicum® at the below mentioned events. Registration shall be submitted via the concerned organizers exclusively.