Why are we doing this research?
The novel coronavirus pandemic is impacting people with rare diseases and their families. Those impacts can be related to physical health, emotional health, availability of supplies, access to care, or other problems. Your responses may help researchers understand the impacts of COVID-19 on the rare disease community.
Who is conducting this study?
The Rare Diseases Clinical Research Network (RDCRN) is conducting this study. The network is funded by the National Institutes of Health (NIH). It includes 23 research teams working to advance diagnosis and treatment of groups of rare diseases. The RDCRN’s Data Management and Coordinating Center at Cincinnati Children’s Hospital Medical Center is coordinating the study.
Who can participate?
You qualify for this study if you or someone you care for has been diagnosed with a rare disease, is 0 to 89 years old, and currently lives in the United States.
What conditions are rare diseases?
In the United States, a rare disease is defined as a condition that affects fewer than 200,000 people. The NIH’s NCATS Genetic and Rare Diseases Information Center offers information on nearly 7000 rare diseases.
What will happen in this study?
You will be asked to share your experience by completing our 20-minute online survey. Some things we hope to learn include:
- Who is becoming infected?
- Where do they live?
- What symptoms are they seeing?
- What treatments are they receiving?
- How is access to care changing?
- Are patients able to obtain needed medical and nutritional supplies?
- How are stress and anxiety impacting patients and families?
Will you or your child be paid?
Participants will not receive payment for completing this survey.
What will happen next?
If you choose to share your contact information, we may follow up with you in the future to learn more about the ongoing impact of COVID-19 on your life. However, if you are not comfortable sharing your contact information, you can complete the survey anonymously. Summary results will be shared with study participants on this website. You will not be able to be identified in the survey results.