NCT05336201

Brief Summary

Randomized Controlled Trial (RTC) testing the efficacy of a telehealth adaptation of the Cognitive-Remediation of Executive and Adaptive Deficits in Youth (C-READY) intervention to prepare adolescents with sickle cell disease for transition of care.

Trial Health

77
On Track

Trial Health Score

Automated assessment based on enrollment pace, timeline, and geographic reach

Enrollment
120

participants targeted

Target at P50-P75 for phase_2

Timeline
14mo left

Started Jul 2022

Longer than P75 for phase_2

Geographic Reach
1 country

1 active site

Status
recruiting

Health score is calculated from publicly available data and should be used for screening purposes only.

Trial Relationships

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Study Timeline

Key milestones and dates

Study Progress77%
Jul 2022Jun 2027

First Submitted

Initial submission to the registry

April 13, 2022

Completed
7 days until next milestone

First Posted

Study publicly available on registry

April 20, 2022

Completed
2 months until next milestone

Study Start

First participant enrolled

July 1, 2022

Completed
4.3 years until next milestone

Primary Completion

Last participant's last visit for primary outcome

September 30, 2026

Expected
9 months until next milestone

Study Completion

Last participant's last visit for all outcomes

June 30, 2027

Last Updated

February 27, 2026

Status Verified

February 1, 2026

Enrollment Period

4.3 years

First QC Date

April 13, 2022

Last Update Submit

February 25, 2026

Conditions

Outcome Measures

Primary Outcomes (2)

  • Transition Readiness

    Questionnaire assessing how knowledgeable the youth is about their health condition and the skills necessary for self-management and self-advocacy

    4-weeks

  • Transition Readiness

    Questionnaire assessing how knowledgeable the youth is about their health condition and the skills necessary for self-management and self-advocacy

    4-months post-intervention

Secondary Outcomes (3)

  • Cognitive Assessment

    4-weeks

  • Cognitive Assessment

    4-months post-intervention

  • Neuroimaging

    4-weeks

Study Arms (2)

C-READY (Cognitive-Remediation of Executive and Adaptive Deficits in Youth)

EXPERIMENTAL

Self-management and goal-setting cognitive remediation

Behavioral: CREADY (Cognitive-Remediation of Executive and Adaptive Deficits in Youth)

Wait-List Control Group

OTHER

Will receive the same C-READY intervention after a 4-week wait period

Behavioral: CREADY (Cognitive-Remediation of Executive and Adaptive Deficits in Youth)

Interventions

Manualized cognitive remediation intervention that includes 1) skills-based remediation (metacognitive training), 2) parent training, and 3) cognitive behavioral approaches. Intervention targets self-management and goal-setting skill building to promote independence in activities necessary for transition of care.

C-READY (Cognitive-Remediation of Executive and Adaptive Deficits in Youth)Wait-List Control Group

Eligibility Criteria

Age10 Years - 18 Years
Sexall
Healthy VolunteersNo
Age GroupsChild (0-17), Adult (18-64)

You may qualify if:

  • Diagnosis of SCD (all genotypes)
  • Active follow-up at Children's of Alabama Hospital
  • Ages 10-18
  • English-speaking

You may not qualify if:

  • History of seizures or overt stroke
  • History of Intellectual Disability or Autism Spectrum Disorder
  • Inability to participate in the MRI scan, such as metal implants, neurostimulators, claustrophobia
  • Currently on psychotropic medications

Contact the study team to confirm eligibility.

Sponsors & Collaborators

Study Sites (1)

University of Alabama at Birmingham

Birmingham, Alabama, 35233, United States

RECRUITING

MeSH Terms

Conditions

Anemia, Sickle CellCognitive DysfunctionAdolescent BehaviorHealth Behavior

Condition Hierarchy (Ancestors)

Anemia, Hemolytic, CongenitalAnemia, HemolyticAnemiaHematologic DiseasesHemic and Lymphatic DiseasesHemoglobinopathiesGenetic Diseases, InbornCongenital, Hereditary, and Neonatal Diseases and AbnormalitiesCognition DisordersNeurocognitive DisordersMental DisordersBehavior

Central Study Contacts

Donna Murdaugh, PhD

CONTACT

Study Design

Study Type
interventional
Phase
phase 2
Allocation
RANDOMIZED
Masking
TRIPLE
Who Masked
PARTICIPANT, CARE PROVIDER, OUTCOMES ASSESSOR
Purpose
SUPPORTIVE CARE
Intervention Model
PARALLEL
Sponsor Type
OTHER
Responsible Party
PRINCIPAL INVESTIGATOR
PI Title
Assistant Professor

Study Record Dates

First Submitted

April 13, 2022

First Posted

April 20, 2022

Study Start

July 1, 2022

Primary Completion (Estimated)

September 30, 2026

Study Completion (Estimated)

June 30, 2027

Last Updated

February 27, 2026

Record last verified: 2026-02

Data Sharing

IPD Sharing
Will not share

Sharing of the data generated by this project is an essential part of our proposed activities and will be carried out in several different ways. We will also make our results available to other scientists interested in understanding cognitive outcomes in youth with sickle cell disease, and to avoid unintentional duplication of research. We also hope that the results of this study will lead to future collaboration to further develop approaches to improve transition of care outcomes in adolescents and youth adults with sickle cell disease. Our plan includes presentation at national and international meetings and publications in peer-reviewed medical journals. All publications of these data will contain a statement of data sharing so that other researchers will know of its availability.

Locations