The Rare Diseases Clinical Research Network, which is funded by the US National Institutes of Health, is gathering information from individuals with rare diseases or their caregivers about their care and well-being during the coronavirus pandemic. The survey, which should take about 20 minutes to complete, asks questions about access to care, whether the participant has been diagnosed with COVID-19, and other topics.
The researchers would like to get 5,000 people to participate and the study is open to individuals up to 89 years old living in the US.
