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Clinical Trial Details — Status: Not yet recruiting

Administrative data

NCT number NCT06251843
Other study ID # Support_SCD
Secondary ID
Status Not yet recruiting
Phase
First received
Last updated
Start date May 2024
Est. completion date February 28, 2025

Study information

Verified date February 2024
Source King's College London
Contact Jane Chudleigh, PhD
Phone 02078485590
Email jane.2.chudleigh@kcl.ac.uk
Is FDA regulated No
Health authority
Study type Observational

Clinical Trial Summary

Background: Sickle cell disorder (SCD), the commonest genetic (faulty gene inherited from both parents) condition in the UK, affects mainly underserved groups. Babies with SCD must start treatments soon after birth to prevent them becoming unwell. Stigma, fear and inequalities can make it difficult for parents to accept their child's diagnosis and access appropriate treatment and support. Aim: Develop strategies to improve support for parents during their child's first year of life following a SCD diagnosis to encourage early engagement with health services. Method: Comprises two stages: (i) Determine why parents choose to engage with support or not (ii) Use this information to co-design strategies to ensure greater accessibility of support for parents during their child's first year of life. Patient and Public Involvement: We are working with Sickle Cell Society and parents of children with SCD. Dissemination: Findings will be shared with support groups, charities, health professionals and academics.


Recruitment information / eligibility

Status Not yet recruiting
Enrollment 30
Est. completion date February 28, 2025
Est. primary completion date February 28, 2025
Accepts healthy volunteers Accepts Healthy Volunteers
Gender All
Age group 18 Years to 99 Years
Eligibility Inclusion Criteria: - Parents whose children have been diagnosed with SCD via screening in the last 36 months - Health professionals involved in the care of children with sickle cell disorder Exclusion Criteria: - Parents whose inclusion may be contradicted on psychosocial grounds or who are unable to give informed consent. - Health professionals who do not have experience of caring for children with sickle cell disorder.

Study Design


Related Conditions & MeSH terms


Locations

Country Name City State
n/a

Sponsors (5)

Lead Sponsor Collaborator
King's College London British Academy, Guy's and St Thomas' NHS Foundation Trust, King's College Hospital NHS Trust, Sickle Cell Society

Outcome

Type Measure Description Time frame Safety issue
Primary Support strategies for families with a child with SCD Co-design strategies to ensure greater accessibility of support for parents during their child's first year of life following a SCD diagnosis June 2025
Secondary Existing support Description of support strategies accessed nationally by parents during the first year following their child's SCD diagnosis July 2024
Secondary Parental reasons for accessing support Reasons why parents choose to access support or not July 2024
Secondary Support priorities priorities for improving accessibility to support for parents during their child's first year of life following a SCD diagnosis for the co-design groups Sept 2025
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