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Guidance for patient involvement in HTA

Patient Engagement

Published and available for citation: Hunter A, Facey K, Thomas V, Haerry D, Warner K, Klingmann I, May M and See W (2018) EUPATI Guidance for Patient Involvement in...

Activist, disrupter, advocate

Patient Engagement

Part of a different era, activist or patient advocate? I started in patient advocacy in 1991. We didn’t call it patient advocacy back then. We got buckets of glue...

Guidance for patient involvement in ethical review of clinical trials

Patient Engagement

Published and available for citation: Klingmann I, Heckenberg A, Warner K, Haerry D, Hunter A, May M and See W (2018) EUPATI and Patients in Medicines Research and Development:...

Patients Involved – Informed Consent Feedback

Patient Engagement

Introduction A patients involved case report of patient feedback improving an informed consent form. UCB employees consulted patients with epilepsy and rheumatoid arthritis to make the form simpler and...

Patients Involved – Informed consent form: Writer’s guide

Patient Engagement

Introduction Partners from Ethic Committees (National Commission of Ethic Committees – CNCP), patient associations, and investigating centres worked in a writer’s guide of five recommendations and six rules for...

Patients Involved – Melanoma board

Patient Engagement

Introduction Expert melanoma nurses and advocacy group experts held a Melanoma board meeting to explore perceptions about novel treatments and scientific developments in the management of melanoma. Description of...

Patients Involved – HIV patients actively involved in multiple phases

Patient Engagement

Introduction A case report on patients recruited by Janssen R&D in a program constructed for the EATG members. Afterwards, the course was handed over for further capacity building within...

Patients Involved – HIV R&D Collaboration

Patient Engagement

Introduction An R&D collaboration between the European AIDS Treatment Group, European Liver Patients Association, Treatment Action Group, and Janssen R&D. Description of the case Patients were involved as follows:...

Patients Involved – Patient medication labeling (USA)

Patient Engagement

Introduction Collaboration between patient advocates with academic institutions (Northwestern University and Emory University) and a pharmaceutical company Merck (Health Literacy and Healthcare Disparities Strategy group) to obtain a simplified...

Patients Involved – Patient organisation promotes Phase I clinical trial

Patient Engagement

Introduction Involvement of the charitable foundation ‘Children with SMA’ (spinal muscular atrophy) to establish contact with the academic institution ‘Institute of Neurology, Psychiatry and Narcology of NAMS Ukraine’ to...

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