Participate in Research: Help Advance Knowledge and Improve Care for Pheochromocytoma and Paraganglioma
People living with pheochromocytoma and paraganglioma (PPGL) play a critical role in advancing research. By participating in studies, patients and families help researchers better understand symptoms, improve diagnosis, and develop better treatments. The Pheo Para Alliance partners with academic institutions and researchers to share opportunities for patients and community members to participate in research that may advance understanding of these rare conditions.
Current Research Opportunities
Institution: Johns Hopkins School of Medicine
Researchers at Johns Hopkins School of Medicine are studying how patients experienced symptoms before being diagnosed with pheochromocytoma or paraganglioma, as well as how artificial intelligence (AI) chatbots answer common questions about adrenal conditions.
Study 1: Share Your Story to Help Improve Diagnosis of Pheochromocytoma and Paraganglioma
Researchers at Johns Hopkins School of Medicine are studying how patients experienced symptoms before being diagnosed with pheochromocytoma or paraganglioma. By listening to patient stories, researchers hope to better understand how symptoms are described and improve early diagnosis for others.
Study 2: Help Evaluate AI Health Information
Researchers at Johns Hopkins are studying how artificial intelligence (AI) chatbots answer common questions about adrenal conditions. Participants will review AI-generated responses and share feedback on whether the information is clear and helpful.
These studies are conducted by researchers at Johns Hopkins School of Medicine and have received Institutional Review Board (IRB) approval. Participation is voluntary.
Are You A Researcher Interested in Recruiting Patients with Lived Experience?
The Pheo Para Alliance (PPA) welcomes research that will advance our knowledge of pheochromocytomas and paragangliomas, as well as investigations that will help patients and their families cope with their condition.
Patient-Focused Research Program Objectives:
1. To provide feedback to investigators during all phases of a research cycle to ensure their work is patient-centered and useful, leading to greater use of research results by patients and the broader
healthcare community.
2. To provide a platform for investigators to share their opportunities for the pheo para community to participate in research.
The Pheo Para Alliance asks investigators seeking patient-centered feedback or a platform to share volunteer research opportunities to complete this form. This information will be used to inform our patient population about the study on this page. Recruitment can be more successful when patients understand, in lay terms, their commitment, the aims of the research, and how it might help them, and when it provides answers to the pheo para population in the future.