Survey on Impacts of COVID-19 on the Rare Disease Community
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. Learn more in this press release about the survey.
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 20 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.
To complete the survey or learn more:
The survey is now closed. Questions? You can email the study team at email@example.com.
Frequently Asked Questions
Why is my rare disease missing from the survey’s dropdown list?
There are approximately 7000 rare disorders. If your rare disease is not included in the dropdown list, please choose “Other / My rare disease is not in the list” and enter your disorder in the text field below. Our survey team is updating the dropdown list as we receive responses.
How can people with undiagnosed disorders reply to the survey?
In the disease dropdown list, please choose “Other / My rare disease is not in the list” and type In the text field below “undiagnosed”.
Can I exit the survey before it is complete and return to finish it later?
Yes. If you want to exit before completing the survey, you will be given a return code (please write this down). You can continue where you left off by choosing “Returning?” in the upper right corner of the survey and enter your return code.
Why are patients from outside the United States excluded from the survey?
As a U.S.-based research organization, we limited the survey to patients based in the United States so we could begin capturing data on the impacts of COVID-19 as quickly as possible. The laws and regulations that oversee human subjects research and sharing data within and outside the United States are different. If non-U.S. groups would like to collaborate with us on the survey, they can email us at firstname.lastname@example.org to explore options.
Will there be a follow up survey?
As part of this survey, you will be asked if we can contact you for future studies. You can choose to participate in this survey anonymously. If you choose to provide contact information, you will have opportunities to participate in follow-up studies in 2021 and beyond.
How will you share survey results with participants?
We plan to provide regular updates about survey participation through interim reports posted to our website. We will also make key results from the survey available to the rare disease community through the website. We may also publish reports of detailed analyses of the data in scientific journals, but we will ensure that key results are circulated directly to the community.
When will you share the results of the survey?
The website now includes a dashboard that presents preliminary results from the survey. The dashboard will be updated regularly. Once the survey closes, the data will be analyzed and summary results will be shared through our survey website.
When will the survey close?
The survey will close on December 15th, 2020.
How can our group participate in the survey?
To help with survey recruiting or explore partnering for data collection on a particular patient population, please email email@example.com.