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Exploring Resilience and Coping Strategies of Young Population in Response to Severe Acute Respiratory Syndrome Corona Virus 2 (SARS-CoV-2) Outbreak: a Longitudinal Study in a Cohort of Patients Affected by Rare Skeletal Disorders.
Sponsor study identifier
observational
15
1 country
1
Study Start
May 12, 2021
Actual (reported)Primary Completion
December 31, 2022
Actual (reported)Study Completion
December 31, 2022
Actual (reported)In the COVID-19 outbreak context, people living with rare diseases have been highly troubled with anxiety, loneliness, and depression. The project evaluates resilience and coping strategies to address pandemic impact by discussion in a dedicated focus group using a web-based platform. The goal is to improve, in a sustainable manner, the coping skills and psychological well-being of children, adolescents, and young adults affected by rare skeletal diseases.
Registry-reported information. Elapsed time and enrollment totals alone do not measure study progress or recruitment pace.
December 31, 2022
Actual (reported)Click on a node to explore related trials.
Dates and qualifiers reported by the registry. Estimated dates do not confirm that a milestone has occurred.
April 12, 2021
Actual (reported)April 14, 2021
Actual (reported)May 12, 2021
Actual (reported)December 31, 2022
Actual (reported)December 31, 2022
Actual (reported)Resilience
Ego-Resiliency Scale (ER89); 14 items; 4-point Likert scale (1=does not apply at all; 2=applies slightly, if at all; 3=applies somewhat; and 4=applies very strong); Score Resiliency Trait: 47-56 Very High, 35-46 High, 23-34 Undetermined, 11-22 Low, 0-10 Very Low
Evaluation at baseline of the study
Resilience
Ego-Resiliency Scale (ER89); 14 items; 4-point Likert scale (1=does not apply at all; 2=applies slightly, if at all; 3=applies somewhat; and 4=applies very strong); Score Resiliency Trait: 47-56 Very High, 35-46 High, 23-34 Undetermined, 11-22 Low, 0-10 Very Low
Change from baseline at 3 month
Resilience
Ego-Resiliency Scale (ER89); 14 items; 4-point Likert scale (1=does not apply at all; 2=applies slightly, if at all; 3=applies somewhat; and 4=applies very strong); Score Resiliency Trait: 47-56 Very High, 35-46 High, 23-34 Undetermined, 11-22 Low, 0-10 Very Low
Patient screening and enrollment will be carried out through: * Rare Skeletal Disorders out-patient visit * Rare Skeletal Disorders in-patient visit * National Patients Organizations
IRCCS Istituto Ortopedico Rizzoli
Bologna, 40139, Italy
Luca Sangiorgi, MD, Phd
IRCCS Istituto ORtopedico Rizzoli
15 participants (actual enrollment reported by the registry).
First Submitted
April 12, 2021
First Posted
April 14, 2021
Study Start
May 12, 2021
Actual (reported)NGS Strategy Effectiveness in Molecular Diagnosis
Change from baseline at 6 month
Anxiety
Evaluation at baseline of the study
Anxiety
Change from baseline at 3 month
Anxiety
Change from baseline at 6 month
Depression
Evaluation at baseline of the study
Depression
Change from baseline at 3 month
Contact the study team to confirm eligibility.
Primary Completion
December 31, 2022
Actual (reported)Study Completion
December 31, 2022
Actual (reported)Last Updated
March 1, 2023
Record last verified: 2023-02
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Source: ClinicalTrials.gov.
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