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Tag: Patient focused drug development

This online library aims to help users find a variety of annotated resources about patient engagement to help them launch patient-centered efforts, enhance existing programs or identify where more work is needed. To suggest an item to be included, contact Taylor Cusher of FasterCures here.

Publications & Talks


This page links to all peer-reviewed publications, presentations, and featured research produced by PatientsLikeMe.

Patient-reported outcomes Patient preference Patient focused drug development

Integrating Rare Disease Patients into Pre-Clinical Therapy Development; Finding our Way with Patient Input

BioPontis Alliance for Rare Diseases

This white paper reports on a 2016 workshop held to define methods and practices to enable integration of patients into...

Patient focused drug development

Patient Information Tool & Implementation Guide

National Health Council

This tool was developed to help patient organizations collect and organize issues of interest to potential medical product developers and...

Benefit-risk assessment Patient organizations Patient focused drug development

A short guide to successful patient involvement in EU-funded research

Innovative Medicines Initiative

A practical guide on how to involve patients across all stages of healthcare research aimed at people writing applications for...

Clinical trials Patient organizations Patient focused drug development

RARE Toolkits

Global Genes

Provides information and emerging best practices on a variety of topics related to living with a rare disease and rare...

Clinical trials Patient organizations Patient focused drug development

Dialogue / Advancing Meaningful Patient Engagement in Research, Development, and Review of Drugs

National Health Council and Genetic Alliance

This paper summarizes recommendations generated during a 2015 workshop   attended by stakeholders from across sectors, including government, patient organizations,...

Clinical trials Patient organizations Patient focused drug development Training

Patient-Focused Drug Development Initiative

FDA Center for Drug Evaluation and Research

Information about the FDA's Patient-Focused Drug Development initiative that aims to more systematically gather patients’ perspectives on their condition and...

Benefit-risk assessment Patient focused drug development

Patients as Critical Partners in Rare Disease Development

Everylife Foundation

This framework outlines opportunities to engage patients in the development and delivery of therapies for rare diseases. (September 2015)

Patient organizations Patient focused drug development

Visual Model of Patient Engagement in Benefit-Risk Assessment through the Medical Product Life Cycle


This visual model was created by participants at a DIA conference depicts how patients across the full spectrum of biomedical...

Patient focused drug development

Recommendations: Patient Engagement Across the Research & Development Continuum

Clinical Trials Transformation Initiative (CTTI)

A comprehensive set of recommendations to guide development of collaborative relationships between sponsors of biomedical research and development and patient organizations.

Patient focused drug development

Working with Regulators: A Focus on the FDA

Cancer Support Community

This toolkit provides information about the roles and responsibilities of the FDA, how to access FDA decision makers, and resources...

Patient organizations Patient focused drug development

Patient Engagement Mapping

Patient Focused Medicines Development

The PFMD mapping tool is a user-populated platform that categorizes and maps existing initiatives and frameworks to provide a snapshot...

Clinical trials Patient organizations Patient focused drug development