SMA Newborn Screening Alliance wins EURORDIS 2022 Patient Engagement Award
With Secretariat support from admedicumlearn more …
Why patient engagement matters
10 reasons why patient engagement is important to clinical researchlearn more …
Drug research in Duchenne simply explained
The video was developed by admedicum in cooperation with the German Society for Muscle Diseaseslearn more …
Business for Patients is in our DNA.
Why cooperate with patients?
Including patient expertise during the entire product life-cycle is key for truly patient-focused innovative products and services. It is instrumental in a successful business. However, how can this be translated into practice? That’s exactly where admedicum comes in.
What?
We help prepare your organization and shape the patient interactions in a way that creates sustainable value for both patients and your business. We provide “fit for purpose” approaches to establishing concepts, tools, advisory groups, networking, coaching and management support where it can help overcome the challenges of a complex relationship between patients and industry.
How?
We provide down to earth day-to-day patient-centric business solutions. Together with our clients from the industry, we make patient-industry collaboration happen. We act as advisors, designers, and enablers to build trustworthy and effective relationships between patients and the industry. We help to merge the beneficial impact for patients and value-for-money for the industry.
René Goedkoop MD, Acting Chief Medical Officer, Medigene AG
We embraced admedicum’s services, in collaboration with Trials24, only by the time that we became aware that the inclusion of patients with certain hematologic malignancies in an ongoing phase I study of a PRAME-specific TCR-T was not as expected due to the very restrictive nature of the eligibility criteria. The admedicum team’s experience and creativity towards a fruitful approach to our reality of clinical study conduct within Germany clearly translated in a gateway towards potentially eligible patients, whom, upon a triage, could ultimately be guided in contacting the investigational sites. In concerto, a dedicated website for the specific conditions, use of advertising on social media and local radio presentation by clinical experts and the principal investigator did land a high number of patients or their caregivers to undergo the initial web-based triage towards an improved patient recruitment. Hence I clearly recommend admedicum’s services for clinical studies for which patient recruitment is expected to be difficult, ideally well before the start of the study.
Sabine Wagner, Board member and regional group leader Network Neuroendocrine Tumors (NeT) e.V.
Many thanks to all of you for the great elaboration of the project and the extensive exchange. I am still impressed that after the initial long questionnaire, which we worked out together over and over again, such a great final result was achieved and that this was only possible because many patients concerned had the opportunity to actively participate in the survey/discussion.
The Sklerodermie e.V. in connection with the scleroderma experts of the DNSS (German Network for Systemic Scleroderma) asked admedicum for support in conducting a survey among more than 1200 scleroderma patients in Germany. The aim was to investigate the extent to which scleroderma patients benefit from the infusion therapy, which is recommended but currently not reimbursed and therefore difficult to obtain.
By systematically involving 390 myotonia patients across 18 European countries through the project MYOPATH, admedicum® was instrumental in demonstrating EMA the great need for patient access to Namuscla® (mexiletine). The EMA Committee of Orphan Medicinal Products (COMP) explicitly highlighted the quality of the MYOPATH survey methodology that led to the capture of important information regarding a lack of treatment access resulting in patient harm.
Ana Mingorance, Chief Development Officer LouLou Foundation, London, UK
The CDKL5 Research & Family conference, which Philipp was instrumental with in shaping the agenda, was an exceptionally great meeting! I had a chance to talk to many of the families and I know they appreciated these days and loved how much opportunity they had to participate and tell their stories and help shape the field and advance it. This was truly the first patient-centric meeting I’ve ever attended, and that was very much thanks to Philipp‘s vision.
Undisclosed pharma participant on the same conference: „You and Carol-Anne organized the best disease-focused family meeting I ever attended. The interaction and co-collaboration amongst all constituents was extremely beneficial to everyone in attendance. I especially appreciated hearing directly from the caregivers their needs and wants for clinical trials and new medications.“
Steffen Stürzebecher, SVP Head of Innovation Unit Specialty Therapeutics, Grünenthal
His vision of a patient centric approach to pharmaceutical development, in particular in rare and orphan diseases, together with the implementation of a concrete series of patient focused events has created a momentum that our company is still benefiting from.
Horst Mehl, past-president and currently honorary president of Mukoviszidose e.V., the German Cystic Fibrosis Association
During his time as CEO of Mukoviszidose e.V., the German Cystic Fibrosis (CF) Association (2002 – 2014) and Managing Director of our research affiliate, Mukoviszidose Institut GmbH (2006 – 2015), I got to appreciate Andreas Reimann. I am a father of a son living with CF and I am grateful to what Andreas has contributed to the lives of ...
Susan Stephenson , RN BSN CCRN Independent Rare Disease Pain Advocate and Consultant N. Chesterfield, VA USA
Philipp possesses all the many skills needed and essential for bringing together patient organizations and their KOLs into the limelight of industry! For more than 30 years, I have promoted genetic diseases and pain awareness as a health professional with a genetic disease and chronic pain.
We are very pleased to welcome Vera Vennedey as Patient Engagement Consultant! Vera brings a strong background in patient preference analysis and health services research. A major project was a feasibility study of a preference analysis within the time frame of an early benefit assessment (three months) in Germany.
We are happy to announce that admedicum was awarded the Global Health & Pharma Biotechnology 2022 award for Best Patient Engagement & Access Expert 2022
While there has been a centralized European marketing authorization procedure for years, Health Technology Assessments (HTA) remained decentralized at state level – this will change with the EU regulation (2021/2282) on HTA.
