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Impact of COVID-19 on People Living with Rare Disease and their Families
Source: Rare Diseases Clinical Research Network [National Center for Advancing Translational Sciences] (RDCRN)Date Published: 4/8/2020Format: PDFAnnotation: This is a brief, self-report, online-based questionnaire administered via REDCap (Research Electronic Data Capture system) to:
1) Estimate the proportion of patients who live with rare diseases who have been diagnosed with COVID-19 infection;
2) Describe the characteristics of the COVID-19 presentation and the course of the infection (including treatment) among patients with rare diseases;
3) Determine whether subgroups of patients defined by sociodemographic variables, geographic location, with particular rare conditions or comorbidity have been affected more frequently or have experienced increased severity of the infection;
4) To learn about the potential interaction between specific treatment regimens 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) Assess the extent to which the COVID-19 pandemic has affected the life of rare disease patients and their families, including their access to medical care and routine medication;to
6) Learn about the main concerns that people who live with rare diseases and their families have with respect 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;
7) 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.
Target population: all patients with rare diseases who live in the United States.
Population: High Risk/Special/Unique Populations
Time to Complete: 20 Minutes
Mode of Administration: Online (e.g., computer-assisted interview)
Administered by: Self Administered
Language(s): English
Impact of COVID-19 on People Living with Rare Disease and their Families: Full Questionnaire https://www.phenxtoolkit.org/toolkit_content/PDF/RDCRN.COVID-19.Survey.pdf
Symptoms and Diagnosis: General Symptoms; Diagnosis; Treatment https://www.phenxtoolkit.org/toolkit_content/PDF/RDCRN_Impact_of_COVID19_Symptoms.pdf
Health Care Access and Service Use During the Pandemic: Health Care; Status https://www.phenxtoolkit.org/toolkit_content/PDF/RDCRN_Impact_of_COVID19_Health_Care.pdf...[See more] [See less]Type: Guideline/Assessment ToolAccess Notes: Associated protocol: https://www.nlm.nih.gov/dr2/RDCRN_COVID19_Protocol_08Apr2020.pdf (https://dr2.nlm.nih.gov/search/?q=22514)
Link to public survey: https://www.rarediseasesnetwork.org/covidsurvey
Free/Publicly Available
Available Formats: PDF
Contact Information: Cincinnati Children's Hospital Medical Center, email: rd.covid19@cchmc.orgIncludes Research Tools: Yes.ID: 22513. From: Disaster Lit®a database of the U.S. National Library of Medicine.REDCap: Yes. -
Impact of COVID-19 on People Living with Rare Disease and their Families: Protocol
Source: Rare Diseases Clinical Research Network [National Center for Advancing Translational Sciences] (RDCRN)Date Published: 4/8/2020Format: PDFAnnotation: This is the protocol for the "Impact of COVID-19 on People Living with Rare Disease and their Families" (https://dr2.nlm.nih.gov/search/?q=22513). The survey is a brief, self-report, online-based questionnaire administered via REDCap (Research Electronic Data Capture system) to:
1) Estimate the proportion of patients who live with rare diseases who have been diagnosed with COVID-19 infection;
2) Describe the characteristics of the COVID-19 presentation and the course of the infection (including treatment) among patients with rare diseases;
3) Determine whether subgroups of patients defined by sociodemographic variables, geographic location, with particular rare conditions or comorbidity have been affected more frequently or have experienced increased severity of the infection;
4) Learn about potential interaction between specific treatment regimens 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) Assess the extent to which the COVID-19 pandemic has affected the life of rare disease patients and their families, including their access to medical care and routine medication;
6) Learn about the main concerns that people who live with rare diseases 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
7) 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.
Population: High Risk/Special/Unique Populations
Time to Complete: 20 Minutes
Mode of Administration: Online (e.g., computer-assisted interview)
Administered by: Self Administered
Language(s): English...[See more] [See less]Type: Study Design/ProtocolAccess Notes: Associated Survey Instrument: https://www.nlm.nih.gov/dr2/RDCRN_COVID-19_Survey_08Apr20204.pdf (https://dr2.nlm.nih.gov/search/?q=22513)
Free/Publicly Available
Available Formats: PDF
Contact Information: Cincinnati Children's Hospital Medical Center, email: rd.covid19@cchmc.orgIncludes Research Tools: Yes.ID: 22514. From: Disaster Lit®a database of the U.S. National Library of Medicine.REDCap: Yes.
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