The Rare Diseases Clinical Research Network (RDCRN) has recently launched a survey aiming to assess the impact of COVID-19 on the rare disease patient community. This initiative is important as it will help gather critical data on how the coronavirus/COVID-19 pandemic is having impacts in the long term. As the future course of the pandemic remains highly uncertain, rare disease patients may continue to face impacts for months or even years into the future.
While the survey has been taking submissions since May, the RCDRN is aiming for a new wave of messaging surrounding it so that it can continue gathering data, as the survey will run until the end of July. As part of this messaging, they have released a Spanish language version, making the survey accessible to a much larger audience.
You can take part in this survey if you are between age 0-89 years and are living with a rare disease or are a caregiver for someone living with a rare disease, which is defined as any illness that affects less than 200,000 people in the country. The online survey should take around 20 minutes to complete.
The pandemic has impacted the lives of almost everyone, and there is no reason to think that rare disease patients are any different; they are dealing with challenges related to their physical health, difficulty accessing medication and medical professionals, mental health difficulties, and problems with supply shortages.
If you share personal identifying information while taking the survey, you may receive a follow up contact in the future to assess COVID-19’s impact further down the road. However, it is also possible to take the survey anonymously and you are not required to share any of your personal contact info.
To take the survey, click here.
For the Spanish (Español) version, click here.
Click here to learn more about the survey.