There is an urgent need to improve awareness of lymphatic diseases among the healthcare providers and the public, as it has become increasingly recognized that the lymphatic system plays a significant role in many disease processes.
As part of our research under the ARPA-H LIGHT program, Team CLIMB at USF is preparing to conduct online surveys and voice sessions with patients who have received a lymphedema diagnosis, healthcare providers, and other stakeholders to characterize the current state of lymphatic disease awareness and identify barriers to diagnosis and treatment. Information about the study is provided below:
Participants Needed for a Study of the Barriers and Challenges for People with Lymphatic Diseases
(University of South Florida, Study009665)
What are lymphatic diseases?
Your lymphatic system is a network of organs, tissues and vessels that work together to move a colorless, watery fluid (lymph) back into your circulatory system (your bloodstream). Your lymphatic system protects you from infection, helps your body fight germs, and destroys old or abnormal cells your body doesn’t need. Your lymphatic system also helps keep the right amount of fluid in your body and helps your body take in fats and vitamins from food so they can make their way into your bloodstream to provide nutrition to your cells.
Many conditions can affect the various parts of your lymphatic system. Some happen during development before birth or during childhood. Others develop as a result of disease or injury.
When the lymphatic system doesn’t work the way it should, fluid, proteins, and waste can build up in the body’s tissues. This can cause swelling (called lymphedema), or fluid to collect in places like the lungs, heart, or stomach. It can also make it harder for wounds to heal and can lead to infections. If the lymphatic system isn’t working well for a long time, it can cause ongoing inflammation, damage tissues, and stop the body from getting rid of toxins and fighting off diseases. This can hurt your overall health and make life harder.
What is this study about?
This study wants to hear what different people think about the barriers and challenges people may face in getting diagnosed with lymphatic diseases and getting treatment for them. We want to hear your thoughts about possible solutions that will help fix these barriers and challenges and make it easier for people to get diagnosed with and treatment for lymphatic diseases.
Why participate?
Your contribution will help identify obstacles in the diagnosis process and the path to obtaining effective treatment. The results of this study will be used to help guide future programs, policies, and patient support initiatives.
What would I be asked to do?
For the online survey, you will be asked to complete a brief (15-20 minute) survey about your experiences related to the diagnosis and treatment of lymphedema.
For the voice session, you will be asked to participate in an interview to share your thoughts about the barriers and challenges people may face in getting diagnosed with lymphatic diseases and getting treatment for them. The interview will take place either in person or virtually via Microsoft Teams. You will be asked to complete a brief demographic questionnaire prior to the voice session.
Who can participate?
Patients, caregivers, and professionals can take part including:
- Individuals who have been diagnosed with a lymphatic condition.
- Caregivers of people with lymphatic conditions.
- Healthcare providers who treat and diagnose lymphatic conditions.
- Individuals representing advocacy organizations who focus on lymphatic conditions.
- Individuals representing insurance/payer institutions.
What is the time commitment? Will I be paid?
The online survey will take up to 20 minutes. The voice session will take up to 60 minutes.
You will not receive financial compensation for participating in a voice session.
Who is conducting the study?
The University of South Florida, a public university, is conducting this study. This study is funded by the Advanced Research Projects Agency for Health (ARPA-H) under the Lymphatic Imaging, Genomic, and pHenotyping Technologies (LIGHT) Program.
Who can I contact if I want to participate or have questions?
You may contact our Discovery Duo: Mengmeng Chang (JEDI - early-stage investigator) and Chris Meister (BRIDGE - patient advocate)