# The Impact of COVID-19 on People Living with Rare Diseases and Their Families

> **NIH NIH U2C** · CINCINNATI CHILDRENS HOSP MED CTR · 2020 · $238,500

## Abstract

Abstract
The impact of the COVID-19 pandemic on people who live with rare diseases is unknown. During the past few
weeks, the principal investigators of the Rare Disease Clinical Research Network (RDCRN) have collectively
designed a survey that may support a longitudinal assessment of the impact of COVID-19. The Data
Management and Coordinating Center (DMCC) of the RDCRN is coordinating the effort. The data collected
from this survey will aid in preparation for future studies and standard of care for the rare disease (RD)
community against the potential re-emergence of COVID-19. We will conduct a baseline survey and plan to
collect follow-up data later on. We will also conduct a survey targeting healthcare providers who care for RD
patients. The objectives of the research are: 1)To estimate the proportion of RD patients who have been
diagnosed with COVID-19 infection; 2)To describe the characteristics of the COVID-19 presentation and the
course of the infection (including treatment) among patients with RD; 3)To determine whether subgroups of
patients defined by sociodemographic variables and geographic location, with particular rare conditions or
comorbidities have been affected more frequently or have experienced increased severity of the infection; 4)
To learn about the potential interaction between specific treatment regimens for rare diseases and COVID-19
infection, and specifically whether certain antibiotic, immunosuppressive, or anti-inflammatory drugs are
associated with the frequency of COVID-19 infection and its severity; 5)To learn about the main concerns that
individuals who live with RD and their families have with respect to COVID-19, and determine how the RDCRN
can respond by providing information and advice through its network of experts, its consortia, and in
collaboration with patient advocacy groups; and 6)To allow follow-up for patients and families who agree to
provide contact information, and linkage of information collected in the survey with data maintained by the
RDCRN for patients enrolled in RDCRN research studies. The goal is to recruit 5,000 participants but there is
not a maximum population as this survey is intended to establish a registry. The registry will be populated via
by the RD patient, parent or provider as appropriate. Collected variables include patient demographics (race,
ethnicity, date of birth, gender), details about COVID-19 infection, and the impact of the pandemic on access to
routine care, special food items, and family life, including the impact of stay-at-home orders on mood and
behavior, with associated demand for professional support to cope with stress and anxiety. The data collection
tool will also be used to identify deaths among the respondents. We have implemented the data collection
instrument in REDCap and plan to initiate enrollment by 05/01/2020. Select survey results that are deemed of
importance by the RDCRN consortia and by the PAGs will be returned periodically to the community. We...

## Key facts

- **NIH application ID:** 10157428
- **Project number:** 3U2CTR002818-02S1
- **Recipient organization:** CINCINNATI CHILDRENS HOSP MED CTR
- **Principal Investigator:** Eileen Catherine King
- **Activity code:** U2C (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2020
- **Award amount:** $238,500
- **Award type:** 3
- **Project period:** 2019-08-05 → 2024-06-30

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/10157428

## Citation

> US National Institutes of Health, RePORTER application 10157428, The Impact of COVID-19 on People Living with Rare Diseases and Their Families (3U2CTR002818-02S1). Retrieved via AI Analytics 2026-05-24 from https://api.ai-analytics.org/grant/nih/10157428. Licensed CC0.

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