Improving communication and validation for patients with Ehlers-Danlos Syndrome
Improving Care for Rare Genetic Diseases: Patient-Provider Communication and Patient Validation in the Ehlers-Danlos Syndromes
This study is all about helping people with Ehlers-Danlos Syndrome feel heard and understood by their doctors, so they can get the care they need more easily.
Quick facts
| Grant type | Career grant |
|---|---|
| Study type | NIH-funded research |
| Funding institution | Indiana University Indianapolis NIH-funded |
| Lab location | 1 site (Indianapolis, United States) |
| Project ID | NIH-10890064 on NIH RePORTER |
What this research studies
This research focuses on enhancing the communication between patients with Ehlers-Danlos Syndrome (EDS) and their healthcare providers. It aims to understand the experiences of patients who often feel disbelieved and invalidated in their healthcare journeys, which can lead to delays in diagnosis and treatment. By exploring the perspectives of both patients and clinicians, the study seeks to identify effective strategies to improve patient validation and support, ultimately leading to better healthcare outcomes. The research will involve gathering qualitative data from patient interviews and clinician feedback to inform best practices in patient-provider interactions.
Who could benefit from this research
Good fit: Ideal candidates for this research are individuals diagnosed with Ehlers-Danlos Syndrome who have experienced challenges in their healthcare interactions.
Not a fit: Patients with Ehlers-Danlos Syndrome who are currently receiving adequate validation and support from their healthcare providers may not benefit from this research.
Why it matters
Potential benefit: If successful, this research could lead to improved patient experiences and outcomes for individuals with Ehlers-Danlos Syndrome by fostering better communication and validation in clinical settings.
How similar studies have performed: Previous research has shown that improving communication and validation in healthcare settings can lead to better patient outcomes, indicating that this approach has potential for success.
Where this research is happening
Indianapolis, United States
- Indiana University Indianapolis — Indianapolis, United States (Active)
Researchers
- Principal investigator: Halverson, Colin Michael Egenberger — Indiana University Indianapolis
- Study coordinator: Halverson, Colin Michael Egenberger
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 below.