By Natalie Homan from In The Cloud Copy
In the United States, a disease is considered “rare” if it affects less than 200,000 Americans at any given time. Diseases can be so rare that only a handful of people in the country have been diagnosed with them, while many others affect no more than several thousand patients. Even though the number of patients with individual diseases is small, the collective number of patients with rare diseases in the United States is estimated to be between 25 and 30 million, quite a staggering number. This is a diverse community, but those who are a part of it experience many of the same challenges, such as needing extra care they can’t provide themselves, being more vulnerable to community-spread illnesses, and having to spend much of their income on medications.
Impact of COVID-19 on the Rare Disease Community
When the COVID-19 pandemic began, members of the rare disease community, their families, and their caregivers were very concerned about how the disease would impact them and their loved ones. They had questions about avoiding the virus, accessing needed medicines, and participating in clinical trials. The COVID-19 pandemic is the first health crisis of its kind in a long time, and while doctors and advocacy groups could attempt answers to these questions, they didn’t have concrete data about a situation like this that would allow them to fully support patients and caregivers.
A Survey by the Rare Diseases Clinical Research Network
The Rare Diseases Clinical Research Network (RDCRN), which is funded by the National Institutes of Health (NIH), created and is now conducting an online survey to find out how the COVID-19 pandemic is affecting the rare disease community, including those with diseases, their families, and their caregivers. The RDCRN hopes to learn what proportion of rare disease patients are getting COVID-19, as well as to understand how social isolation is impacting the entire rare disease community. This survey can help doctors, patients, and caregivers through the duration of the pandemic, but the information they collect will be particularly valuable should another similar health crisis occur in the future.
The RDCRN program pursues better diagnoses and treatments of rare diseases by supporting clinical studies, working with about 140 patient advocacy groups, and facilitating collaboration among specialists around the world. This organization is perfectly placed to carry out a survey like this. They have the infrastructure to carry it out, the expertise needed to understand the rare disease community, and the outreach needed to find patients who can answer important questions.
The Survey: “Impact of COVID-19 on People Living with Rare Diseases and Their Families.”
The survey is open and can be taken by rare disease patients or caregivers over 18 years of age in the United States. It takes about 20 minutes to complete and asks general questions about getting needed medical supplies, managing stress and anxiety, and how symptoms of your rare disease have changed since the pandemic began. If you have been diagnosed with COVID-19, the survey asks about the care you received and how your rare disease impacted your treatment and recovery.
The RDCRN hopes to have at least 5,000 responses to help them gain a broad understanding of how a national health emergency like this affects the rare disease community. You can learn more about the survey or take it on the RDCRN website.
Check out the original press release here.
