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

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Description

The Neurology module extracted from the Online Survey on Recovery from COVID-19 contains 14 items measuring symptom experiences as related to headaches, sense of smell and taste, tremors and vibrating sensations, other neurological sensations. Each symptom section asks for the presence of certain symptoms, when these symptoms began, and where symptoms are present.

Specific Instructions

None

Availability

Available

Protocol

Headaches

1. Have you experienced any new HEADACHES OR RELATED ISSUES since the start of your COVID-19 illness?

[ ] Yes

[ ] No

2. Which of the following symptoms have you experienced since the start of your COVID-19 illness?

[ ] Headaches, at the base of the skull

[ ] Headaches, in the temples

[ ] Headaches, behind the eyes

[ ] Headaches, diffuse (entire brain)

[ ] Headaches/pain after mental exertion

[ ] Headaches, other: ______________

[ ] Sensation of brain warmth/"on fire"

[ ] Sensation of brain pressure

[ ] Migraines

[ ] Stiff neck

[ ] None of the above

3. When did you experience these symptoms?
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.

Week

1

Week

2

Week

3

Week

4

Month

2

Month

3

Month

4

Month

5

Month

6

Month

7

Headaches and related symptoms

[ ]

[ ]

[ ]

[ ]

[ ]

[ ]

[ ]

[ ]

[ ]

[ ]

Sense of Smell and Taste

4. Have you experienced any changes to your SENSE OF SMELL OR TASTE since the start of your COVID-19 illness?

[ ] Yes

[ ] No

5. Which of the following symptoms have you experienced since the start of your COVID-19 illness? *

[ ] Loss of smell

[ ] Phantom smells (imagining/hallucinating smells - smelling things that arent there)

[ ] Heightened sense of smell

[ ] Altered sense of smell

[ ] Loss of taste

[ ] Phantom taste (imagining/hallucinating tastes - tasting things when theres nothing in your mouth)

[ ] Heightened sense of taste

[ ] Altered sense of taste

[ ] None of the above

6. When did you experience these symptoms?
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.

Week

1

Week

2

Week

3

Week

4

Month

2

Month

3

Month

4

Month

5

Month

6

Month

7

Changes to sense of smell and taste

[ ]

[ ]

[ ]

[ ]

[ ]

[ ]

[ ]

[ ]

[ ]

[ ]

7. If you had phantom tastes, please describe them:

________________________________________________

8. If you had phantom smells, please describe them:

________________________________________________

Tremors and Vibrating Sensations

9. Have you experienced any TREMOR OR VIBRATION SENTATIONS since the start of your COVID-19 illness?

Tremor: Involuntary, rhythmic muscle contraction leading to shaking movements in one or more parts of the body

Vibration sensation: A buzzing feeling, when you feel like your muscles, fingers, or legs are vibrating or shaking inside, but you dont see the movement

[ ] Yes

[ ] No

10. Which of the following symptoms have you experienced since the start of your COVID-19 illness?

Please specify the location on your body in the text box. If multiple locations, please separate them with a comma (i.e. leg, torso, hand).

[ ] Tremors: ________________

[ ] Vibrating sensations: ________________

11. When did you experience these symptoms?

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.

N/A

Week

1

Week

2

Week

3

Week

4

Month

2

Month

3

Month

4

Month

5

Month

6

Month

7

Tremors

[ ]

[ ]

[ ]

[ ]

[ ]

[ ]

[ ]

[ ]

[ ]

[ ]

[ ]

Vibrating sensations

[ ]

[ ]

[ ]

[ ]

[ ]

[ ]

[ ]

[ ]

[ ]

[ ]

[ ]

12. Please use this space to describe examples of your tremors or body vibration/shaking during your illness.

Please do not include any identifying information (such as name or location).

________________________________________________

Weakness, numbness, tingling, coldness, and other sensations

13. Which of the following NEUROLOGICAL SENSATION SYMPTOMS have you experienced since the start of your COVID-19 illness, if any?

Please specify the location on your body in the text box. If multiple locations, please separate them with a comma (i.e. hand, leg, foot).

[ ] Skin sensations: burning, tingling, or itchiness without rash

[ ] Numbness/loss of sensation: ________________

[ ] Numbness/weakness on one side of the body only

[ ] Coldness: ________________

[ ] Tingling/prickling/pins and needles sensation: ________________

[ ] Electrical zaps/electrical shock sensation: ________________

[ ] Facial paralysis (please indicate where on face was paralyzed): ________________

[ ] Sensation of facial pressure/numbness, left side

[ ] Sensation of facial pressure/numbness, right side

[ ] Sensation of facial pressure/numbness, other: ________________

[ ] Weakness: ________________

[ ] None of the above

14. When did you experience these symptoms?

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.

N/A

Week

1

Week

2

Week

3

Week

4

Month

2

Month

3

Month

4

Month

5

Month

6

Month

7

All neurological sensations

[ ]

[ ]

[ ]

[ ]

[ ]

[ ]

[ ]

[ ]

[ ]

[ ]

[ ]


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, Senior

Participants

Adults suffering COVID-19 or suspected COVID-19 infection symptoms for longer than 1 week.

Selection Rationale

The Neurology module extracted from the Online Survey on Recovery from COVID-19 is brief and easy to interpret. This protocol is also available in a wide variety of languages.

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

Davis, H., Assaf, G., McCorkell, L., Wei, H., Low, R., Re'em, Y., & Akrami, A. (2021). Questionnaire to Characterize Long COVID: 200+ symptoms over 7 months (in 9 languages) (Version 4). figshare. https://doi.org/10.6084/m9.figshare.13642553.v4 (['http://patientresearchcovid19.com/']) 

General References

None

Protocol ID

992003

Variables
Export Variables
Variable Name Variable IDVariable DescriptiondbGaP Mapping
PX992003_Long_Covid_Symptoms_Neurology_Describe_Tremors_Vibration_Shaking
PX992003120000 Please use this space to describe examples more
of your tremors or body vibration/shaking during your illness. Please do not include any identifying information (such as name or location). show less
N/A
PX992003_Long_Covid_Symptoms_Neurology_Experienced_Tremors_Location
PX992003100200 Which of the following symptoms have you more
experienced since the start of your COVID-19 illness? Please specify the location on your body in the text box. If multiple locations, please separate them with a comma (i.e. leg, torso, hand). Tremors show less
N/A
PX992003_Long_Covid_Symptoms_Neurology_Experienced_Tremors_Vibrating_Sensations
PX992003100100 Which of the following symptoms have you more
experienced since the start of your COVID-19 illness? Please specify the location on your body in the text box. If multiple locations, please separate them with a comma (i.e. leg, torso, hand). show less
N/A
PX992003_Long_Covid_Symptoms_Neurology_Experienced_Vibrating_Sensations_Location
PX992003100300 Which of the following symptoms have you more
experienced since the start of your COVID-19 illness? Please specify the location on your body in the text box. If multiple locations, please separate them with a comma (i.e. leg, torso, hand). Vibrating Sensations show less
N/A
PX992003_Long_Covid_Symptoms_Neurology_Experience_Headache_Symptoms
PX992003030000 When did you experience these symptoms? more
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. Headaches and related symptoms: show less
N/A
PX992003_Long_Covid_Symptoms_Neurology_Experience_Neurological_Sensations
PX992003140000 When did you experience these symptoms? more
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. All neurological sensations show less
N/A
PX992003_Long_Covid_Symptoms_Neurology_Experience_Smell_Taste_Symptoms
PX992003060000 When did you experience these symptoms? more
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. Changes to sense of smell and taste show less
N/A
PX992003_Long_Covid_Symptoms_Neurology_Headaches_Related
PX992003010000 Have you experienced any new HEADACHES OR more
RELATED ISSUES since the start of your COVID-19 illness? show less
N/A
PX992003_Long_Covid_Symptoms_Neurology_Headaches_Symptoms
PX992003020000 Which of the following symptoms have you more
experienced since the start of your COVID-19 illness? show less
N/A
PX992003_Long_Covid_Symptoms_Neurology_Headaches_Symptoms_Other
PX992003020200 Which of the following symptoms have you more
experienced since the start of your COVID-19 illness? Headaches, other show less
N/A
PX992003_Long_Covid_Symptoms_Neurology_Neurological_Sensation_Symptoms
PX992003130100 Which of the following NEUROLOGICAL more
SENSATION SYMPTOMS have you experienced since the start of your COVID-19 illness, if any? Please specify the location on your body in the text box. If multiple locations, please separate them with a comma (i.e. hand, leg, foot). show less
N/A
PX992003_Long_Covid_Symptoms_Neurology_Neurological_Sensation_Symptoms_Coldness_Location
PX992003130300 Which of the following NEUROLOGICAL more
SENSATION SYMPTOMS have you experienced since the start of your COVID-19 illness, if any? Please specify the location on your body in the text box. If multiple locations, please separate them with a comma (i.e. hand, leg, foot). Coldness show less
N/A
PX992003_Long_Covid_Symptoms_Neurology_Neurological_Sensation_Symptoms_Electrical_Zaps_Location
PX992003130500 Which of the following NEUROLOGICAL more
SENSATION SYMPTOMS have you experienced since the start of your COVID-19 illness, if any? Please specify the location on your body in the text box. If multiple locations, please separate them with a comma (i.e. hand, leg, foot). Electrical zaps/electrical shock sensation show less
N/A
PX992003_Long_Covid_Symptoms_Neurology_Neurological_Sensation_Symptoms_Facial_Paralysis_Location
PX992003130600 Which of the following NEUROLOGICAL more
SENSATION SYMPTOMS have you experienced since the start of your COVID-19 illness, if any? Please specify the location on your body in the text box. If multiple locations, please separate them with a comma (i.e. hand, leg, foot). Facial paralysis (please indicate where on face was paralyzed) show less
N/A
PX992003_Long_Covid_Symptoms_Neurology_Neurological_Sensation_Symptoms_Facial_Pressure_Location
PX992003130700 Which of the following NEUROLOGICAL more
SENSATION SYMPTOMS have you experienced since the start of your COVID-19 illness, if any? Please specify the location on your body in the text box. If multiple locations, please separate them with a comma (i.e. hand, leg, foot). Sensation of facial pressure/numbness, other show less
N/A
PX992003_Long_Covid_Symptoms_Neurology_Neurological_Sensation_Symptoms_Numbness_Location
PX992003130200 Which of the following NEUROLOGICAL more
SENSATION SYMPTOMS have you experienced since the start of your COVID-19 illness, if any? Please specify the location on your body in the text box. If multiple locations, please separate them with a comma (i.e. hand, leg, foot). Numbness/loss of sensation show less
N/A
PX992003_Long_Covid_Symptoms_Neurology_Neurological_Sensation_Symptoms_Tingling_Location
PX992003130400 Which of the following NEUROLOGICAL more
SENSATION SYMPTOMS have you experienced since the start of your COVID-19 illness, if any? Please specify the location on your body in the text box. If multiple locations, please separate them with a comma (i.e. hand, leg, foot). Tingling/prickling/pins and needles sensation show less
N/A
PX992003_Long_Covid_Symptoms_Neurology_Neurological_Sensation_Symptoms_Weakness_Location
PX992003130800 Which of the following NEUROLOGICAL more
SENSATION SYMPTOMS have you experienced since the start of your COVID-19 illness, if any? Please specify the location on your body in the text box. If multiple locations, please separate them with a comma (i.e. hand, leg, foot). Weakness show less
N/A
PX992003_Long_Covid_Symptoms_Neurology_Phantom_Smells
PX992003080000 If you had phantom smells, please describe them: N/A
PX992003_Long_Covid_Symptoms_Neurology_Phantom_Taste
PX992003070000 If you had phantom tastes, please describe them: N/A
PX992003_Long_Covid_Symptoms_Neurology_Smell_Taste_Changes
PX992003040000 Have you experienced any changes to your more
SENSE OF SMELL OR TASTE since the start of your COVID-19 illness? show less
N/A
PX992003_Long_Covid_Symptoms_Neurology_Smell_Taste_Symptoms
PX992003050000 Which of the following symptoms have you more
experienced since the start of your COVID-19 illness? show less
N/A
PX992003_Long_Covid_Symptoms_Neurology_Tremor_Vibration_Sensations
PX992003090000 Have you experienced any TREMOR OR VIBRATION more
SENTATIONS since the start of your COVID-19 illness? show less
N/A
PX992003_Long_Covid_Symptoms_Neurology_When_Experience_Symptoms_Tremors
PX992003110100 When did you experience these symptoms? more
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. Tremors show less
N/A
PX992003_Long_Covid_Symptoms_Neurology_When_Experience_Symptoms_Vibrating_Sensations
PX992003110200 When did you experience these symptoms? more
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. Vibrating Sensations 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

University College London, UCL, COVID, long COVID, Neurology, symptoms, headache, sense of smell, sense of taste, tremors, vibrating sensation, weakness, numbness, tingling, coldness, neurological sensations

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.