Rare Diseases Clinical Research Network Launches COVID-19 Impacts Survey for Participants in the NIH COVID19 Antibody Study (COVIDSRCH) Dakota Campbell Wed, 05/04/2022 - 09:30
COVID-19 virus

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 About Impacts of COVID-19 sheila.wolfer@… Mon, 12/06/2021 - 10:44
COVID Patient Survey 2021 Follow-Up image

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-19 sheila.wolfer@… Fri, 07/23/2021 - 13:48
A Rare Disease Day Update: RDCRN Survey on Impacts of COVID-19

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. Video features Marc E. Rothenberg, MD, PhD, Principal Investigator of the Consortium of Eosinophilic Gastrointestinal Disease Researchers (CEGIR) and Thomas W. Ferkol, MD, Co-Principal Investigator of the Genetic Disorders of Mucociliary Clearance Consortium (GDMCC).

Preliminary Survey Results Highlight Impact of COVID-19 on Rare Disease Community Dakota Campbell Wed, 02/10/2021 - 15:57
Maurizio Macaluso, MD, DrPH, FACE

Maurizio Macaluso, MD, DrPH, FACE, co-principal investigator with the Rare Diseases Clinical Research Network’s Data Management and Coordinating Center, shares how 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 Diseases Dakota Campbell Mon, 02/08/2021 - 14:54
Photo courtesy of the CDC | Alissa Eckert, MS; Dan Higgins, MAMS

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. 

Research Survey for Rare Disease Patients and Their Families About Impacts of COVID-19 Dakota Campbell Fri, 05/08/2020 - 10:43
An estimated 30 million people in the United States are affected by rare diseases. Complete an online survey from the NIH-funded Rare Diseases Clinical Research Network to help researchers understand the impacts of COVID-19 on the rare disease community.

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.