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HEMOCOG: Neurocognitive Functions, Health Literacy, and Transition Readiness in Pediatric Hemophiliacs

Examining Cognition, Health Literacy, Transition Readiness, and Educational Experiences in Patients with Hemophilia


Psychology and Biobehavioral Medicine

Diseases Treated:


Eligibility Overview:

  • St. Jude hemophilia patients
  • 6–18 years old
  • Speak English 
  1. Hemophilia is an inherited deficiency of factors 8 and 9, which leads to bleeding if not appropriately treated. Symptoms range widely. They can include mucosal bleeding, soft tissue bleeding, joint bleeding, or rarely, intracranial bleeding.

    Scientists have measured neurocognitive functioning in hemophilia in the setting of intracranial bleeding and HIV. But research has been limited since the prophylactic use of factor product became standard of care. Updated information on anxiety and neurocognitive skills such as attention and executive functioning will shed light on attention deficit/hyperactivity disorder (ADHD) in these patients. Bleeding in hemophilia patients also can affect school attendance, grades, and educational experiences.

    Little is known about health literacy or its link to neurocognitive functioning in hemophilia patients. Health literacy can influence disease management, medication adherence, and transition readiness to adult care.

    Primary Objectives

    This study will describe attention and executive functioning skills, health literacy, and transition readiness in patients with hemophilia.

    Eligibility Criteria

    Inclusion criteria include:

    • St. Jude hemophilia patients 
    • 6–18 years old
    • Speak English

    Exclusion criteria include:

    • Deaf or blind
    • Hemophilia patients who have had a neurocognitive assessment in the last 6 months
    • History of curative therapy for hemophilia (such as a liver transplant or gene therapy)
    • Unable to speak fluent English

    Study Site

    St. Jude Children’s Research Hospital, Memphis, Tennessee

  2. About this study

    We want to study how children and adolescents with hemophilia think and feel.

    We will look at:

    • How hemophilia affects their attention span
    • How often they have anxiety
    • How well they understand written information
    • How well adolescents move to adult care
    • How caregivers view their children’s school experiences

    Patients in this study will:

    • Take tests to study their attention and understanding
    • Complete an activity that will show how well they understand health information
    • Answer questions about moving to adult care (for patients age 12 and up)

    The caregiver will:

    • Answer questions about the patient’s background  
    • Complete an activity about health information
    • Take a survey about the patient’s school experiences

    Purpose of this clinical trial

    This study will help us understand how hemophilia affects how patients think, feel, and experience school. The study will also tell us how well patients and their families understand health information. This research will help us improve our care for hemophilia patients. It will also help us learn how to help make the move to adult care easier.

    Eligibility overview

    To take part in this study, you must be:

    • A St. Jude hemophilia patient
    • 6–18 years old
    • An English speaker
  3. HEMOCOG  Quick View
    Sponsor St. Jude Children's Research Hospital
    Trial start date September 2022
    Estimated enrollment 75 children and young adults with hemophilia and their caregivers
    Study type Non-therapeutic


    Ages 6–18 years old
    Site Principal Investigator

    Nidhi Bhatt, MD, and Jennifer Longoria, PhD

    Study site St. Jude Children’s Research Hospital
    For a consultation or to discuss St. Jude Physician/Patient Referral Office

St. Jude Children’s Research Hospital
262 Danny Thomas Place
Memphis, TN 38105  USA
Voice: 1-888-226-4343 or 901-595-4055
24-Hour Emergency Access Pager: 1-800-349-4334

The above information is intended to provide only a basic description about a research protocol that may be currently active at St. Jude. The details made available here may not be the most up-to-date information on protocols used by St. Jude. To receive full details about a protocol and its status and or use at St. Jude, a physician must contact St. Jude directly.