By Silke Schoch, Manager, Research and Programs In an effort to create sustainable, compliant, and patient-friendly agreements between stakeholders and the patient and caregiver community, the National Health Council (NHC) […]
Patient Engagement
What is the Role of Patient-Reported Data in Outcomes-Based Contracts?
What is the Role of Patient-Reported Data in Outcome-Based Contracts? This webinar, which is part of our Patient-Focused Medical Product Development Webinar Series, featured Sarah Butler, MHS, Head, Client Solutions, […]
Observer-reported or Proxy-reported: Is One Better than the Other?
By Aimee Lee Russell, Programs Associate On February 24, the National Health Coucil held a webinar to discuss differences between caregiver-reported and proxy-reported outcomes, which are not are not the same. […]
National Library of Medicine’s (NLM) Request for Information on ClinicalTrials.gov Modernization
The National Health Council (NHC) appreciates the opportunity to comment on the National Library of Medicine’s (NLM) Request for Information on ClinicalTrials.gov modernization. Clinical trials are a vital part of […]
Patient-Journey Mapping Toolbox
Patient Experience Mapping Toolbox Understanding the patient’s journey with disease is critical as it enables understanding the context of the patient experience, the natural history of the disease from the […]
PFMPD Webinar Series: Rare-Disease Listening Sessions with NORD and the FDA
PFMPD Webinar Series: Rare-Disease Listening Sessions with NORD and the FDA By Aimee Lee Russell, Associate, Programs This blog highlights the first webinar in our new Patient-Focused Medical Product Development […]
Consent Designed For Patients By Patients: A New Consent Standard For Patients Participating In Life-Saving Research
Consent Designed For Patients By Patients: A New Consent Standard For Patients Participating In Life-Saving Research Event Time: 2:00 p.m. ET Event Location: Webex This webinar featured a presentation on […]
Observer-reported or Proxy-reported: Is One Better than the Other?
Observer-reported or Proxy-reported: Is One Better than the Other? Event Location: Webex This webinar featured Laurie Burke, MPH, Founder of the LORA Group, LLC, C. Grace Whiting, JD, President & […]
A Look at Rare Disease Listening Sessions with NORD and the FDA
A Look at Rare Disease Listening Sessions with NORD and the FDA This webinar featured Debbie Drell, Director of Membership, at the National Organization for Rare Diseases (NORD), and Andrea […]
Patient-Focused Drug Development Guidance: Incorporating Clinical Outcome Assessments into Endpoints for Regulatory Decision-Making; Public Workshop
The National Health Council (NHC) is pleased to provide comments on the Food and Drug Administration’s (FDA) discussion documents related to Guidance 4: “Incorporating Clinical Outcome Assessments into Endpoints for […]