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.
This study will describe attention and executive functioning skills, health literacy, and transition readiness in patients with hemophilia.
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
St. Jude Children’s Research Hospital, Memphis, Tennessee
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.
To take part in this study, you must be:
- A St. Jude hemophilia patient
- 6–18 years old
- An English speaker
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 Conditions
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.