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Protocol - Long COVID - Symptoms Due to COVID-19 - Genitourinary

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Description

This protocol helps better describe and understand the patient experience and recovery of those with confirmed or suspected COVID-19, with a specific emphasis on Long COVID experience especially with genitourinary symptoms.

Specific Instructions

None

Availability

Available

Protocol

Reproductive and Urinary Symptoms

1. Did you experience these symptoms, and when did you experience them?

Please mark symptoms for the first 4 weeks, then months (if applicable). Even if you have only experienced these symptoms for part of a week or month, please select it. If you experienced none of the symptoms in a set, select the checkbox (None of the below issues apply to me) above the grouped set.

[ ] None of the below reproductive and urinary symptoms apply to me

Reproductive and Urinary Symptoms

N/A

Week 1

Week 2

Week 3

Week 4

Month 2

Month 3

Month 4

Month 5

Month 6

Month 7

All menstrual/period issues

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Bladder control issues

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All Other Symptoms - Checkbox

2. Have you experienced any of these symptoms since the start of your COVID-19 illness?
(Please choose all options that apply)

[ ] Early Menopause

[ ] Post-Menopausal bleeding/spotting

[ ] Abnormally heavy periods/clotting

[ ] Abnormally irregular periods
[ ] Other menstrual issues ________

[ ] Decrease in size of testicles/penis

[ ] Pain in testicles

[ ] Other semen/penis/testicles issues ________

[ ] Sexual dysfunction (difficulty maintaining erection, vaginal dryness, difficulty orgasming)

[ ] Urinary issues, other ________

[ ] None of the above

Symptom Course

3. How severe were/are your symptoms over the course of the weeks/months?

If you experienced multiple severities for symptoms within the time period, select the most severe within that time period.

No symptom

Very Mild

Mild

Moderate

Severe

Very Severe

Week 1

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Week 2

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Week 3

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Week 4

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Month 2

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Month 3

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Month 4

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Month 5

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Month 6

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Month 7+

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4. Which of these descriptions appropriately describes your experience with relapses, and your symptom course overall? Please select all that apply:

[ ] My relapses happen in a regular pattern (monthly, daily, or weekly).

[ ] My relapses happen in an irregular pattern (randomly).

[ ] My relapses happen in response to a trigger (stress, alcohol, exercise/exertion, etc).

[ ] My relapses are getting shorter/easier over time.

[ ] My relapses are getting longer/harder over time.

[ ] My relapse severity has stayed about the same over time.

[ ] Overall, my symptoms have slowly gotten better over time.

[ ] Overall, my symptoms have stayed about the same over time.

[ ] Overall, my symptoms have slowly worsened over time.

[ ] I got worse rapidly.

[ ] I got better rapidly.

[ ] Other ___________

7. Which of these trigger a relapse or worsening of symptoms? Please select all that apply:

[ ] Stress

[ ] Alcohol

[ ] Caffeine

[ ] Heat

[ ] Period/menstruation

[ ] Week before period/menstruation

[ ] Exercise

[ ] Physical activity

[ ] Mental activity

[ ] Other ___________


Personnel and Training Required

None

Equipment Needs

None

Requirements
Requirement CategoryRequired
Major equipment No
Specialized training No
Specialized requirements for biospecimen collection No
Average time of greater than 15 minutes in an unaffected individual No
Mode of Administration

Self-administered questionnaire

Lifestage

Adult

Participants

Adults aged 18 years or older

Selection Rationale

PhenX used input from the PhenX Steering Committee to enable rapid response and release of COVID-19 related protocols in the Toolkit.

Language

English, Other languages available at source

Standards
StandardNameIDSource
Derived Variables

None

Process and Review

Not applicable

Protocol Name from Source

Online Survey on Recovery from COVID-19

Source

University College London. (2022). Online Survey on Recovery from COVID-19, Section “Reproductive and Urinary Sections”.

General References
None
Protocol ID

992017

Variables
Export Variables
Variable Name Variable IDVariable DescriptiondbGaP Mapping
PX992017_Long_COVID_Symptoms_Genitourinary_Other_Covid_Symptoms
PX992017020100 Have you experienced any of these symptoms more
since the start of your COVID-19 illness? (Please choose all options that apply) show less
N/A
PX992017_Long_COVID_Symptoms_Genitourinary_Other_Covid_Symptoms_Other_Menstrual_Issues
PX992017020200 Have you experienced any of these symptoms more
since the start of your COVID-19 illness?: Other menstrual issues show less
N/A
PX992017_Long_COVID_Symptoms_Genitourinary_Other_Covid_Symptoms_Other_Semen_Penis_Testicle_Issues
PX992017020300 Have you experienced any of these symptoms more
since the start of your COVID-19 illness?: (Please choose all options that apply) : Other semen/penis/testicles issues show less
N/A
PX992017_Long_COVID_Symptoms_Genitourinary_Other_Covid_Symptoms_Other_Urinary_Issues
PX992017020400 Have you experienced any of these symptoms more
since the start of your COVID-19 illness?: (Please choose all options that apply) : Urinary issues, other show less
N/A
PX992017_Long_COVID_Symptoms_Genitourinary_Reproductive_Urinary_Symptoms_Bladder_Control_Issues
PX992017010300 Did you experience these symptoms, and when more
did you experience them? Reproductive and Urinary Symptoms: Bladder control issues show less
N/A
PX992017_Long_COVID_Symptoms_Genitourinary_Reproductive_Urinary_Symptoms_Menstrual_Issues
PX992017010200 Did you experience these symptoms, and when more
did you experience them? Reproductive and Urinary Symptoms: All menstrual/period issues show less
N/A
PX992017_Long_COVID_Symptoms_Genitourinary_Reproductive_Urinary_Symptoms_None
PX992017010100 Did you experience these symptoms, and when more
did you experience them? Please mark symptoms for the first 4 weeks, then months (if applicable). Even if you have only experienced these symptoms for part of a week or month, please select it. If you experienced none of the symptoms in a set, select the checkbox (None of the below issues apply to me) above the grouped set. show less
N/A
PX992017_Long_COVID_Symptoms_Genitourinary_Reproductive_Urinary_Symptoms_Other
PX992017010400 Did you experience these symptoms, and when more
did you experience them? Reproductive and Urinary Symptoms: All Other Symptoms - Checkbox show less
N/A
PX992017_Long_COVID_Symptoms_Genitourinary_Symptom_Courses_Replase
PX992017040100 Which of these descriptions appropriately more
describes your experience with relapses, and your symptom course overall? Please select all that apply: show less
N/A
PX992017_Long_COVID_Symptoms_Genitourinary_Symptom_Courses_Replase_Other
PX992017040200 Which of these descriptions appropriately more
describes your experience with relapses, and your symptom course overall? Please select all that apply: Other show less
N/A
PX992017_Long_COVID_Symptoms_Genitourinary_Symptom_Relapse_Trigger
PX992017050100 Which of these trigger a relapse or more
worsening of symptoms? Please select all that apply: show less
N/A
PX992017_Long_COVID_Symptoms_Genitourinary_Symptom_Relapse_Trigger_Other
PX992017050200 Which of these trigger a relapse or more
worsening of symptoms? Please select all that apply: Other show less
N/A
PX992017_Long_COVID_Symptoms_Genitourinary_Symptom_Severity_Month_2
PX992017030500 How severe were/are your symptoms over the more
course of the weeks/months? If you experienced multiple severities for symptoms within the time period, select the most severe within that time period. Month 2 show less
N/A
PX992017_Long_COVID_Symptoms_Genitourinary_Symptom_Severity_Month_3
PX992017030600 How severe were/are your symptoms over the more
course of the weeks/months? If you experienced multiple severities for symptoms within the time period, select the most severe within that time period. Month 3 show less
N/A
PX992017_Long_COVID_Symptoms_Genitourinary_Symptom_Severity_Month_4
PX992017030700 How severe were/are your symptoms over the more
course of the weeks/months? If you experienced multiple severities for symptoms within the time period, select the most severe within that time period. Month 4 show less
N/A
PX992017_Long_COVID_Symptoms_Genitourinary_Symptom_Severity_Month_5
PX992017030800 How severe were/are your symptoms over the more
course of the weeks/months? If you experienced multiple severities for symptoms within the time period, select the most severe within that time period. Month 5 show less
N/A
PX992017_Long_COVID_Symptoms_Genitourinary_Symptom_Severity_Month_6
PX992017030900 How severe were/are your symptoms over the more
course of the weeks/months? If you experienced multiple severities for symptoms within the time period, select the most severe within that time period. Month 6 show less
N/A
PX992017_Long_COVID_Symptoms_Genitourinary_Symptom_Severity_Month_7
PX992017031000 How severe were/are your symptoms over the more
course of the weeks/months? If you experienced multiple severities for symptoms within the time period, select the most severe within that time period. Month 7+ show less
N/A
PX992017_Long_COVID_Symptoms_Genitourinary_Symptom_Severity_Week_1
PX992017030100 How severe were/are your symptoms over the more
course of the weeks/months? If you experienced multiple severities for symptoms within the time period, select the most severe within that time period. Week 1 show less
N/A
PX992017_Long_COVID_Symptoms_Genitourinary_Symptom_Severity_Week_2
PX992017030200 How severe were/are your symptoms over the more
course of the weeks/months? If you experienced multiple severities for symptoms within the time period, select the most severe within that time period. Week 2 show less
N/A
PX992017_Long_COVID_Symptoms_Genitourinary_Symptom_Severity_Week_3
PX992017030300 How severe were/are your symptoms over the more
course of the weeks/months? If you experienced multiple severities for symptoms within the time period, select the most severe within that time period. Week 3 show less
N/A
PX992017_Long_COVID_Symptoms_Genitourinary_Symptom_Severity_Week_4
PX992017030400 How severe were/are your symptoms over the more
course of the weeks/months? If you experienced multiple severities for symptoms within the time period, select the most severe within that time period. Week 4 show less
N/A
Long COVID
Measure Name

Long COVID - Symptoms Due to COVID-19

Release Date

March 17, 2023

Definition

This is a measure of an individual’s new or continuing COVID-19 symptoms.

Purpose

Presence of lingering COVID-19 symptoms is a sign of Long COVID, and use of this measure helps with understanding people’s experience with COVID-19 and implications of Long COVID.

Keywords

Johns Hopkins, COVID, long COVID, symptoms, menstrual, bladder, menopause

Measure Protocols
Protocol ID Protocol Name
992001 Long COVID - Symptoms Due to COVID-19 - Screener
992002 Long COVID - Symptoms Due to COVID-19 - Memory
992003 Long COVID - Symptoms Due to COVID-19 - Neurology
992004 Long COVID - Symptoms Due to COVID-19 - Psychological Risk Factors
992005 Long COVID - Symptoms Due to COVID-19 - Speech, Language, and Hearing
992006 Long COVID - Symptoms Due to COVID-19 - Psychiatric (Short Form)
992007 Long COVID - Symptoms Due to COVID-19 - Psychiatric (Long Form)
992008 Long COVID - Symptoms Due to COVID-19 - Temperature Regulation and Cardiovascular
992009 Long COVID - Symptoms Due to COVID-19 - Cardiovascular Symptom Course
992010 Long COVID - Symptoms Due to COVID-19 - Respiratory
992011 Long COVID - Symptoms Due to COVID-19 - Gastrointestinal (Long Form)
992012 Long COVID - Symptoms Due to COVID-19 - Gastrointestinal (Short Form)
992013 Long COVID - Symptoms Due to COVID-19 - Allergies
992014 Long COVID - Symptoms Due to COVID-19 - Skin and Hair
992015 Long COVID - Symptoms Due to COVID-19 - Ocular (Long Form)
992016 Long COVID - Symptoms Due to COVID-19 - Ocular (Short Form)
992017 Long COVID - Symptoms Due to COVID-19 - Genitourinary
992018 Long COVID - Symptoms Due to COVID-19 - Muscle and Joint
992019 Long COVID - Symptoms Due to COVID-19 - Tooth Pain
992020 Long COVID - Symptoms Due to COVID-19 - Pediatric
Publications

There are no publications listed for this protocol.