Exploring the ethics of patient involvement in developing drugs for rare diseases
Official title: The Ethics of Engagement in Patient-Focused Drug Development for Rare Diseases
Funded at Stanford University · NIH-11039662 · Data updated 2026-11-12
This study looks at how patients and their families are helping to shape new treatments for rare diseases, while also exploring the tricky ethical questions that come up when they work with researchers and drug companies, all to make sure that everyone benefits fairly from these new therapies.
Quick facts
| Grant type | R01 grant |
|---|---|
| Study type | NIH-funded research |
| Funding institution | Stanford University NIH-funded |
| Lab location | 1 site (Stanford, United States) |
| Project start | February 1, 2025 |
| Project end | January 31, 2029 |
| Funding year | 2025 |
| Award (this year) | $671,033 |
| NIH project number | 1R01HG014059-01 |
| Project ID | NIH-11039662 on NIH RePORTER |
Who could benefit from this research
✓Could help
Ideal candidates for this research are individuals and families affected by rare diseases who are engaged or interested in the drug development process.
✕Less likely to help
Patients with common diseases or those not involved in patient-focused drug development may not benefit from this research.
What this research studies
This research investigates how patient and family groups are increasingly influencing the development of new therapies for rare diseases. It focuses on the ethical challenges that arise when these groups collaborate with academic institutions and drug developers. By examining the competing values and interests in patient-focused drug development, the research aims to create tools that can help manage these ethical dilemmas. The goal is to ensure that patient engagement leads to effective and equitable drug development processes.
Why it matters
Potential benefit: If successful, this research could enhance the ethical framework surrounding patient involvement in drug development, leading to more effective therapies for rare diseases.
How similar studies have gone: While patient engagement in drug development is becoming more common, the specific ethical challenges in this context are still being explored, making this research both relevant and timely.
Where this research is happening
-
Stanford University
Stanford, United States Active
Researchers
- Principal investigator: Halley, Meghan — Stanford University
- Study coordinator: Halley, Meghan
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About this research
- This is an active NIH-funded research project — typically early-stage science, not a clinical trial accepting patient enrollment.
- Some NIH-funded labs run parallel clinical studies or seek volunteers for related work. To check, contact the principal investigator or institution listed above.
- For full project details, budget, and progress reports, visit the official NIH RePORTER page.