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This toolkit, developed by the National Center for Advancing Translational Sciences at the National Institutes of Health, provides patient groups with the tools needed to advance medical research. Tools are developed for and by patient groups in concert with their academic, government, industry, and advocacy partners, and are designed to ensure patients are engaged as essential partners from beginning to end of the research and development process. Resources cover topics such as the principles of community engagement, starting a patient registry, and giving input in the informed consent process.
a151db50d05edb400de3e738848b1618 Recruit & Retain Participants https://contact.rarediseases.info.nih.gov/Gard/s/?language=en_US 2019-03-11T00:00:00Z Community Partnerships Consent Participatory Research Registries Toolkits/Guides