Public Workshop on Enhancing the Incorporation of Patient Perspectives in Clinical Trials Public Workshop on Enhancing the Incorporation of Patient Perspectives in Clinical Trials | CTTI and FDA Workshop on ideas for best practices and key considerations for enhancing the incorporation of patient perspectives on clinical trial access, design, conduct, Read more…
National Hemophilia Foundation History Presentation NHF History Presentation | NBDF (formerly NHF) NBDF: A video that introduces the NBDF mission to an Industry partner, serving as an example of how a patient advocacy group may onboard an Industry partner. Watch Video
Patient Engagement Patient Engagement | National Health Council Guidance for PAGs on fairly and adequately capturing patient voice in clinical research. Learn More Here
Bridge: Patient to Investigator Training Bridge: Patient to Investigator Training | COPD Foundation Training module preparing COPD patients and caregivers to work with researchers and become a part of study teams. Learn More Here
MT Pharmacy Video MT Pharmacy | CISCRP and Sanofi Video PSA from CISCRP and Sanofi that emphasizes the value of participation in clinical research, contributed by Sanofi. Watch Video
Why Diversity Matters in Clinical Trials Video Why Diversity Matters in Clinical Trials | CSL Video resource for PAGs and the whole clinical trials community, message on the importance of making sure trials are diverse from a quality and data standpoint. Watch Video
Mapping the Patient Journey Mapping the Patient Journey | DTRA DTRA: Downloadable journey maps, including Oncology Journey Map, the Rare Disease Journey Map, and the RSV Vaccine Journey Map, that PAGs can use to show patients visual path for clinical trial participation. Learn More Here
CISCRP’s FAQ Section CISCRP’s FAQ Section | CISCRP Website for PAGs to access frequently asked questions about clinical trials and glossary of terms. Learn More Here
European Patients’ Academy on Therapeutic Innovation (EUPATI) Open Classroom European Patients’ Academy on Therapeutic Innovation (EUPATI) Open Classroom | EUPATI “EUPATI: Course for patient education in research and development. Free courses, personalized learning pathway, flexible e-learning, certificate course for a fee. “”EUPATI Open Classroom” by EUPATI (https://eupati.eu/) is licensed under Read more…
European Patients’ Academy on Therapeutic Innovation (EUPATI) Toolbox European Patients’ Academy on Therapeutic Innovation (EUPATI) Toolbox | EUPATI “EUPATI: Toolbox for PAG leadership that provides guidance on R&D topics. “”EUPATI Toolbox” by EUPATI (https://eupati.eu/) is licensed under CC BY-NC-SA 4.0. (https://creativecommons.org/licenses/by-nc-sa/4.0/)” Learn More Here
RareLaunch – Research Ready RareLaunch – Research Ready | NORD Course for PAGs to prepare for participation in research, especially in rare diseases: understand the basics of natural history studies, learn about the Institutional Review Board (IRB) Process, collaborate with researchers and industry, and leverage social media to recruit participants. Read more…
Breaking the Barriers to Clinical Trials Breaking the Barriers to Clinical Trials | TigerLilly PDF toolkit addressing barriers to clinical Trials for PAGs use with cancer patients and others. Includes tips for effectively working with your healthcare team. View & Download Here
Understanding Clinical Trials Understanding Clinical Trials | TigerLilly PDF of a comprehensive brochure on understanding clinical trials for breast cancer patients. View & Download Here
Phases of Clinical Trials Phases of Clinical Trials | CSL A one page sheet tailored for patients, their caregivers, and trusted healthcare providers, outlining the phases of clinical trials and methods for identifying relevant trial participation opportunities. View & Download Here
The 5 Steps in Drug Development The 5 Steps in Drug Development | NORD NORD: PDF handout from the RDCA and Critical Path Institute to help PAG Research staff understand the drug development process View & Download Here
Impact of Research When Your Organization Drives It Impact of Research When Your Organization Drives It | NORD NORD: Powerpoint presentation on the value of PAG involvement in research. View & Download Here
How to Connect with Scientists and Industry Stakeholders How to Connect with Scientists and Industry Stakeholders | NORD NORD: Enroll in the course to access a Power point presentation to help PAGs to inform how to engage with medical and scientific community on how to form a Medical/scientific advisory board Read more…
Using Registry Data to Empower Your Organization and Engage with Researchers Using Registry Data to Empower Your Organization and Engage with Researchers | NORD NORD: Enroll in the free course to access a Power Point Presentation that outlines a case study on how a Patient Advocacy Group can launch a Read more…
Getting Ready for Research as a Rare Disease Patient Advocate Getting Ready for Research as a Rare Disease Patient Advocate | NCAT NCATS: Powerpoint presentation from the NORD RareLaunch Research Ready Workshop that introduces Rare Disease Patient Advocates to resources for involvement in research. View & Download Here
First-of-its-kind consortium brings together advocacy and industry organizations to address efficiencies across disease types that have the potential to speed the development of medicines for patients.