Follow-up Survey on Impacts of COVID-19 on the Rare Disease Community

… Complete an Online Survey …

The Follow-up Survey Is Now Open

The Rare Diseases Clinical Research Network (RDCRN) launched a survey in May 2020 for rare disease patients and their families. The goal was to understand the impacts of COVID-19 on the rare disease community.  While the initial survey closed in December 2020, we are now conducting a follow-up survey to learn more about your experiences during the pandemic. If you completed our initial survey, please consider participating in this follow-up survey.

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 about our initial COVID-19 impacts survey in this press release about the survey or view preliminary results.

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?

Those who participated in the initial COVID-19 Impacts survey.

How can I complete the follow-up survey?

The follow-up survey is only open to those who completed the initial COVID-19 survey. If you completed the initial survey, you will receive an invitation and unique link to the follow-up survey via email. If you completed the initial survey but do not receive a link or have questions, please email

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 Genetic and Rare Diseases Information Center hosted by the NIH’s National Center for Advancing Translational Sciences (NCATS) 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:

  • Has any of the below changed since the last survey?
    • 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?
    • Have you been able to access mental health resources/support?
  • What is your experience with applying mandated public health precautions, i.e., wearing a mask and social distancing?
  • Have you been vaccinated or do you plan to be?
  • Do you have concerns about the vaccines against COVID-19?
  • Have you experienced long-term COVID symptoms?
  • Have you experienced a breakthrough COVID-19 infection after being fully vaccinated?

Will you or your child be paid?

Participants will not receive payment for completing this survey.

What will happen next?

We may follow up with you in the future to learn more about the ongoing impact of COVID-19 on your life. Summary results will be shared with study participants on this website. You will not be able to be identified in the survey results.

To learn more:

Questions? You can email the study team at

Frequently Asked Questions

What if my rare disease is 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.

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 “undiagnosed” in the text field below.

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 to explore options.

Will there be more follow-up surveys?

There is potential for additional follow-up studies in 2022 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?

Preliminary results of our initial impacts survey can be found here. We will also add a dashboard to our website showing interim results of the follow-up survey as it is underway. Once the follow-up 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 Wednesday, December 15th, 2021.