COVID-19 Research News
National Survey Reveals Impact of COVID-19 on People Living with Rare Diseases…February 16, 2024
The devastating impact of COVID-19 on the general population is well-documented—but less is known about the millions of people living with rare diseases.
Rare Diseases Clinical Research Network Launches COVID-19 Impacts Survey for…May 4, 2022
The National Institutes of Health-supported Rare Diseases Clinical Research Network (RDCRN) conducted a series of online surveys to find out how the COVID-19 pandemic has impacted the rare diseases community. Now, the RDCRN is launching a survey for participants in the NIH COVID-19 antibody study (COVIDSRCH) to compare with the survey completed by individuals with rare diseases.
RDCRN Launches Follow-up Survey for Rare Disease Patients and Their Families…December 6, 2021
The Rare Diseases Clinical Research Network (RDCRN) invites those who participated in the 2020 survey “Impacts of COVID-19 on the Rare Disease Community” to complete an online follow-up survey about the ways COVID-19 has impacted people with rare diseases and their families since the beginning of the pandemic.
A Rare Disease Day Update: RDCRN Survey on Impacts of COVID-19July 23, 2021
Researchers from the Rare Diseases Clinical Research Network deliver an update on the survey of the impacts of COVID-19 of people living with rare diseases during Rare Disease Day at NIH, March 2021.
Rare Disease Research Challenges, Opportunities Due to COVID-19 Featured in New…May 4, 2021
Challenges in conducting clinical research in the midst of the COVID-19 pandemic are spotlighted in an article from three consortia of the Rare Diseases Clinical Research Network (RDCRN).
Preliminary Survey Results Highlight Impact of COVID-19 on Rare Disease…February 10, 2021
A preliminary analysis of more than 3,400 responses to a recent survey of people living with rare diseases and their caregivers is shedding new light on their experiences during the novel coronavirus (COVID-19) pandemic.
RDCRN Partnering with NIAID on Serosurvey of People Living with Rare DiseasesFebruary 8, 2021
The Rare Diseases Clinical Research Network (RDCRN) will be collaborating with the NIH’s National Institute of Allergy and Infectious Diseases (NIAID) and the University of Pittsburgh on a SARS-CoV-2 Pandemic Serosurvey among people who live with rare diseases.
Lab Notes: A Rare Disease Physician-Scientist Reports on Impacts of COVID-19May 29, 2020
Mustafa Sahin, MD, PhD, of Boston Children’s Hospital is a practicing physician and researcher. He is also the principal investigator of the Rare Diseases Clinical Research Network’s (RDCRN’s) Developmental Synaptopathies Consortium (DSC). In that role, he leads a team of researchers, physicians and patient advocacy groups working across ten medical centers to study three rare genetic syndromes that often cause autism spectrum disorder and intellectual disability.
Research Survey for Rare Disease Patients and Their Families About Impacts of…May 8, 2020
Rare disease patients or their caregivers are invited to complete a 20-minute online survey from home about the ways the novel coronavirus pandemic is impacting people with rare diseases and their families.