For the billions of residents living with a rare diseases, the new coronavirus infection COVID-19 sponsors trials, from probably reduced access to required medical care to likely increased tension and stress.
A new online study started by the National Institutes of Health-supported Rare Diseases Clinical Research Network (RDCRN) tries to find out how the COVID-19 pandemic affects people with rare diseases and their families and their caregivers.
Results will help the private virus research society shed light on the requirements of people with rare disorders during the COVID-19 pandemic and other potential health dangers, and to notify future research efforts.
The Conditional Progress
The RDCRN, led by NIH’s National Center for Advancing Translational Sciences (NCATS), in collaboration with nine other NIH Institutes and Centers, is currently made up of 20 newly supported clinical research consortia centered on better knowledge whereby rare conditions progress and promoting improved approaches for analysis and remedy.
Scientists from different systems at hundreds of clinical sites around the world work together with about 140 sufferers advocacy groups to study more than 200 rare disorders, including immune system diseases, heart disease, lung and kidney diseases, brain growth, and more.
“As a leader in producing innovative, collaborative clinical analysis to change the lives of people with rare illnesses, the RDCRN is uniquely placed to survey this,” said Anne Pariser, M.D., the manager of the NCATS Office of Rare Diseases Research, which runs the RDCRN. “The network has the required support, disease expertise, and way to patients through patient groups to find answers to important issues.”
Rare Diseases Data
Though individually rare, affecting only a few hundred to several thousand people, rare diseases collectively influence an estimated 30 million people in the United States. Many unique conditions are life-threatening, and about half of those afflicted are children.
The study survey, designed and led by the RDCRN Data Management and Coordinating Center at Cincinnati Children’s Hospital Medical Center, is one of the first efforts public to quantify the impact of a health crisis on the rare disorder center.
It is seeking acknowledgments from at least 5,000 people with a rare disease or caring for someone who has a rare condition. The research will be distributed online to associates. Additionally, some RDCRN-funded investigators plan to include survey results into natural history studies, which follow sufferers to chart the progression and course of a condition.
The Therapeutic Care
The survey is open to anyone with a rare condition, along with family and caregivers, and is not restricted to the terms considered within the RDCRN.
The reason for the survey began through conversations among network researchers and regular advocacy groups.
“People attacked by a rare illness, and families and caregivers, originally examined how to avoid the virus,” stated RDCRN Program Director Tiina Urv, Ph.D. “Then, they became concerned about the entrance to medications and continuing therapeutic care during the pandemic and the status of clinical cases. They were worried about meeting the medical challenges that they face every day.