Understanding the Challenges of Lymphatic Disease Diagnosis & Care
We Need Your Voice!
Research Team:
Dr Roger Zemp, Dr Nathaniel Haven, Dr Priscilla Machado, Amy Beaith-Johnson, Andrea Weinreb, Hailee Mayer, Bahareh Kian Pour
Institutions: Sponsor:
University of Alberta, Thomas Jefferson University Advanced Research Projects Agency for Health (ARPA-H)
Purpose of this Research
Your Voice Matters
This study explores key issues affecting patients with lymphatic diseases, including barriers to diagnosis and treatment, insurance and cost concerns, as well as education & advocacy. It is sponsored by ARPA-H, a government agency that funds innovative biomedical research.
Many healthcare providers know little about the lymphatic system & patients are often left out when new technology is designed.
Who can Participate? You are invited to participate in this research study if you are 18 years or older and can provide informed consent. We are looking for: Patients diagnosed with Lymphatic disease Caregivers who are caring for someone living with a Lymphatic disease Healthcare Providers involved in diagnosis and/or management of Lymphatic diseases. Industry representatives who work with technologies that may be used to assess or manage lymphatic diseases. Advocates or Researchers involved in Lymphatic disease advocacy associations and/or research.
We are looking for people to share their experiences and thoughts on lymphatic disease care. Voice sessions & surveys allow people from the different groups to get involved early and help teach new researchers about the lymphatic system.
How to Participate Two ways to get involved are: Voice session: An interview with 2 members of the research team (called the Discovery Duo) to share your experiences & perspectives on lymphatic disease (approx. 60 min) Online survey: A short questionnaire about experiences & perspectives (approx 20 min.) Participation is voluntary and unpaid.
Sign up here
Results & What’s Next Your thoughts and experiences are important to us because they will help improve how lymphatic diseases are diagnosed and treated, how care is covered, and how people learn about these conditions.
Your contributions help us meet our goal of developing Lymphatic imaging technology that can help improve care for Lymphedema and other Lymphatic disorders.
This research study has been approved by the University of Alberta Health Research Ethics Board Pro00161959 and by Thomas Jefferson University Institutional Board (IRB) iRISID-2025-1406.
More info