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Clinical Trial Details — Status: Recruiting

Administrative data

NCT number NCT04581577
Other study ID # 286495
Secondary ID
Status Recruiting
Phase
First received
Last updated
Start date September 11, 2020
Est. completion date April 30, 2021

Study information

Verified date March 2021
Source Royal Brompton & Harefield NHS Foundation Trust
Contact Lydia Spurr, MBBS
Phone 0207 352 8121
Email l.spurr@rbht.nhs.uk
Is FDA regulated No
Health authority
Study type Observational

Clinical Trial Summary

This study aims to evaluate perceived clinical and psychosocial experiences of patients and their families during the Covid-19 pandemic. it is important to understand the implications of the pandemic for this population, particularly given its likely protracted course, and resultant limitations to daily activities and clinical care. This will help clinicians plan support and adaptations to the services they provide in the medium to long term.


Recruitment information / eligibility

Status Recruiting
Enrollment 75
Est. completion date April 30, 2021
Est. primary completion date December 31, 2020
Accepts healthy volunteers Accepts Healthy Volunteers
Gender All
Age group 16 Years and older
Eligibility Inclusion Criteria: Adult group - Patient over 16 years of age with a confirmed diagnosis of neuromuscular and/or neurological disorder - Able and willing to provide informed consent Paediatric group - Parent of a patient under 16 years of age with a confirmed diagnosis of neuromuscular and/or neurological disorder - Able and willing to provide informed consent Exclusion Criteria: - Unwilling for telephone questionnaire to be audio-recorded

Study Design


Related Conditions & MeSH terms


Intervention

Other:
Semi-structured telephone questionnaire
Semi-structured telephone questionnaire

Locations

Country Name City State
United Kingdom Royal Brompton Hospital London

Sponsors (1)

Lead Sponsor Collaborator
Royal Brompton & Harefield NHS Foundation Trust

Country where clinical trial is conducted

United Kingdom, 

Outcome

Type Measure Description Time frame Safety issue
Primary Qualitative evaluation of the perceived clinical and psychosocial impact of the Covid-19 pandemic in patients with neuromuscular and neurological disorders Evaluation of semi-structured questionnaires using thematic analysis 4 months
Secondary Quantification of the proportion of patients with NMD who have had suspected or confirmed Covid-19 infection during the pandemic Quantitative analysis of the proportion of questionnaire respondents reporting confirmed or suspected Covid-19 infection 4 months
Secondary Qualitative evaluation of the social environment of patients with NMDs Qualitative analysis describing the social environment of patients with NMDs 4 months
Secondary Qualitative evaluation of the social activities of patients with NMDs Qualitative analysis describing the social activities of patients with NMDs 4 months
Secondary Qualitative evaluation of the professional activities of patients with NMDs Qualitative analysis describing the professional activities of patients with NMDs 4 months
Secondary Qualitative evaluation of the impact of the Covid-19 pandemic on families of patients with neuromuscular and neurological disorders Evaluation of semi-structured questionnaires using thematic analysis 4 months
Secondary Qualitative evaluation of concerns regarding medical care from the perspective of patients with NMDs and their families during the Covid-19 pandemic Evaluation of semi-structured questionnaires using thematic analysis 4 months
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