Patient Engagement

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Patient Engagement Resource Center

Published by EATRIS

Patient EngagementPatient InformationResearch and Drug Development

The Patient Engagement Resource center is an easy to navigate platform to help researchers get started with patient engagement in research. This toolbox provides helpful resources to help researchers understand the basics of patient engagement, and guide them through the different phases of patient engagement, from planning to conducting and evaluating.

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Short guide on patient partnerships in rare disease research projects

Published by EJPRD

Patient EngagementPatient InformationResearch and Drug Development

This guide has been developed with the help of a working group comprising of patient representatives and research funders. Its main goal is to encourage fruitful, sustainable and enduring partnerships between scientists and patient organisa tions, co-leading the way for systematic patient-centered research. It also aims to foster a partnership culture and contribute to an improved understanding of the added value of patient engagement and involvement in basic, pre-clinical, translational and social research for the Rare Disease Community in Europe and beyond.

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Procedural document: data collection and registration of clinical trials

Published by Orphanet

Clinical TrialOrphanetPatient Engagement

Orphanet offers, amongst a range of expert resources on rare diseases, a directory of national and multinational clinical trials aiming to help: – clinical investigators working in the field of rare diseases find each other, establish collaborations, recruit patients; – patients and general public retrieve information on ongoing clinical trials for a particular disease, and stay informed on clinical trials that are recruiting; – experts, funding agencies and pharmaceutical industry obtain visibility on therapeutic development in the field of rare disease.

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Feasibility-Patient engagement in trial endpoInternationalselection 

Published by IRDiRC

Clinical DevelopmentClinical TrialEndpointOutcome MeasurePatient EngagementResearch and Drug DevelopmentTrail EndpoInternationalSelection

Guidance on the pivotal clinical trials outcomes measures .The important of the patient’s feedback. Academics can then assess whether there is an outcome measure available that can measure this – if not, outcome measure(s) may need to be developed.

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Stakeholders interactions – Patients Affairs Staff

Published by IRDiRC

Clinical DevelopmentEarly Access SupportFDA Regulatory AdvicePatient AdvicePatient Affairs StaffPatient EngagementPatient SupportRegulatory AffairsResearch and Drug Development

At the FDA, the Patient Affairs Staff (PAS) is devoted to supporting cross-cutting patient engagement activities across the FDA. Its mission is to coordinate and support patient engagement activities across FDA to facilitate awareness and collaboration with patients, their advocates and the FDA

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