Support Strategies for Parents During the First Year Following Their Child's Diagnosis of Sickle Cell Disorder

NCT ID: NCT06251843

Last Updated: 2024-02-09

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

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Recruitment Status

NOT_YET_RECRUITING

Total Enrollment

30 participants

Study Classification

OBSERVATIONAL

Study Start Date

2024-05-31

Study Completion Date

2025-02-28

Brief Summary

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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.

Detailed Description

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Conditions

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Sickle Cell Disease

Study Design

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Observational Model Type

OTHER

Study Time Perspective

PROSPECTIVE

Study Groups

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Parents of children with sickle cell disorder

Parents whose child has been diagnosed with sickle cell disorder in the last 36 months

No interventions assigned to this group

Health professionals

Health professionals involved in the care of children sickle cell disorder

No interventions assigned to this group

Eligibility Criteria

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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.
Minimum Eligible Age

18 Years

Maximum Eligible Age

99 Years

Eligible Sex

ALL

Accepts Healthy Volunteers

Yes

Sponsors

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British Academy

UNKNOWN

Sponsor Role collaborator

Sickle Cell Society

UNKNOWN

Sponsor Role collaborator

King's College Hospital NHS Trust

OTHER

Sponsor Role collaborator

Guy's and St Thomas' NHS Foundation Trust

OTHER

Sponsor Role collaborator

King's College London

OTHER

Sponsor Role lead

Responsible Party

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Responsibility Role SPONSOR

Central Contacts

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Jane Chudleigh, PhD

Role: CONTACT

02078485590

Other Identifiers

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Support_SCD

Identifier Type: -

Identifier Source: org_study_id

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