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OpenTrials
Completed

NCT Number: NCT06251843

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

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.

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Key information

Conditions

Sickle Cell Disease Anemia Anemia, Hemolytic Anemia, Hemolytic, Congenital Anemia, Sickle Cell Congenital, Hereditary, and Neonatal Diseases and Abnormalities Genetic Diseases, Inborn Hematologic Diseases Hemic and Lymphatic Diseases Hemoglobinopathies

Age range

18 year–99 year

Sex eligibility

All sexes

Study type

Observational

Primary location

Alder Hey Children's Hospital, Liverpool, United Kingdom

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Who can participate

Healthy volunteers accepted: Yes

Only the study team can determine whether someone qualifies for participation.

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.

Treatment and study plan

Primary outcomes

  1. Support strategies for families with a child with SCD

    Time frame: June 2025

    Co-design strategies to ensure greater accessibility of support for parents during their child's first year of life following a SCD diagnosis

Secondary outcomes

  1. Existing support

    Time frame: July 2024

    Description of support strategies accessed nationally by parents during the first year following their child's SCD diagnosis

  2. Parental reasons for accessing support

    Time frame: July 2024

    Reasons why parents choose to access support or not

  3. Support priorities

    Time frame: Sept 2025

    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

Sponsors and collaborators

Lead sponsor

King's College London

Other

Collaborators

  • British Academy
  • Guy's and St Thomas' NHS Foundation Trust
  • King's College Hospital NHS Trust
  • Sickle Cell Society

Registry information

Official study title

Co-designing Support Strategies for Parents to Encourage Early Engagement With Health Services During the First Year Following Their Child's Diagnosis of Sickle Cell Disorder

Important dates

Study start
2024
Primary completion
2025
Study completion
2025
First posted
Feb 9, 2024
Registry last updated
Aug 7, 2026

OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.

View the official ClinicalTrials.gov record (opens in a new tab)

This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.

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