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 rd.covid19@cchmc.org to explore options.

Can you offer a Spanish language version of the survey?

A Spanish language version of the survey is now available. Learn more and find the survey link here.

Will there be a follow-up survey?

We intend to have a follow-up survey in fall 2020 to assess any changes that may have occurred after the baseline survey.

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?

We plan to keep the survey open at least through August 30, 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 rd.covid19@cchmc.org.