NHF funds a broad range of research programs that seek to increase our understanding of the science behind bleeding disorders, how they affect people's lives, and pathways to better treatments and cures.
Pilot Study of Telemedicine vs In Person Physical Therapy Intervention for Hemophilia
Elizabeth Hall is the physical therapist for the Hemophilia and Thrombosis Treatment Center (HTC) at Rady Children’s Hospital San Diego (RCHSD). She has worked at RCHSD for over ten years and has worked closely with Dr. Thornburg for the past seven years. She has expertise in the evaluation and treatment of patients 0-21 years in inpatient, rehabilitation, and outpatient settings. She has developed particular expertise in the evaluation and management of children and adolescents with bleeding disorders. She is an active member of the Western States PT working group.
Yoga for People with Bleeding Disorders and Chronic Pain
The primary aim of this study is to determine if people with bleeding disorders and chronic pain will attend and find benefit from an 8-week mindfulness-based yoga program. This program was chosen because of its focus on building skills in the areas of gentle yoga and mindfulness. Yoga positions will be modified to meet the needs of people who have joint contractures and limited range of motion. The program will include instruction in yoga and meditation techniques that are designed to reduce pain, fatigue, psychological distress, sleeping disturbances, and increase functional capacity.
Analysis of Lower Extremity Joint Characteristics, Biomechanics, and Neuromotor Control during Gait in Patients with Hemophilia
Hemophilia causes repetitive bleeding episodes throughout the musculoskeletal system, primarily into joints, such as knees and ankles. This leads to significant joint damage resulting in increased pain reproduction, decreased functional abilities, such as walking, and negatively impacts quality of life. Traditionally the extend of joint damage has been examined via clinical assessments, such as the Hemophilia Joint Health Scores, x-rays, MRIs, and more recently musculoskeletal ultrasound (MSKUS). However, these modalities fail to establish the global impact of joint damage on the entire body of a person with hemophilia and their functional abilities. Analyzing joint motion and forces acting upon the joint during walking has been a widely established technique to gain understanding of abnormal three-dimensional movements and is a key factor in clinical decision making-processes. With the overall goal of establishing better treatment approaches for persons with hemophilia it is vital to understand the underlying functional joint limitations. Therefore, the purpose of this study is to investigate characteristics of damaged joints, joint motion and control as well as forces acting upon the joint during walking in persons with hemophilia.
Women with Hemophilia: Gender-based Differences in the Delivery of Comprehensive Care
This study will evaluate hemophilia treatment center (HTC) services provided to women with hemophilia A or B (Factor VIII or Factor IX level [ 50%). The American Thrombosis and Hemostasis Network (ATHN) maintains a confidential national database for patients with bleeding and clotting disorders. Utilizing this existing ATHNdataset, the study will analyze the effect of gender on the delivery of comprehensive care in patients with hemophilia A and B. The project will focus on how gender impacts three specific components of care: identification of patients with factor VIII or IX deficiency, inclusion of patients in the comprehensive care model, and monitoring of joint bleeding as a key component of comprehensive care provided by HTCs. Demonstrating gender-based disparities in comprehensive care would provide evidence for making changes to improve the clinical care provided to women with hemophilia. This study will add to the knowledge regarding the care of women with hemophilia, helping to inform future studies of this under-researched population.
Exercise Versus DDAVP in Patients with Mild Hemophilia A - Which Is Better and Do They Work Additively in Improving Hemostasis?
Preliminary work done by Dr. Riten Kumar and colleagues has documented that moderate intensity exercise is associated with a significant improvement in multiple coagulation parameters in post-adolescent males with mild-moderate hemophilia A. As a continuation to our previous work, we now hope to compare the impact of moderate intensity exercise to DDAVP on laboratory coagulation parameters in post-adolescent males with mild hemophilia A. We also hope to investigate the impact of sequentially administering these interventions on hemostatic indices. Our over-arching hypothesis is that increase in coagulation parameters (particularly FVIII:C) with moderate intensity aerobic exercise would be non-inferior to DDAVP. We additionally hypothesize that we will appreciate an additive effect of sequentially administering clinical implications for patients with MHA. It may negate the use of DDAVP pre- exercise and could potentially lead to clinicians advising patients to appropriately warm-up (e g running), to raise their FVIII/VWF levels prior to undertaking more rigorous sports. It will also lay the foundation for future studies investigating the interaction between aerobic exercise and hemostasis in subjects with bleeding disorders these interventions. Should our hypothesis be correct, our study would have significant clinical implications for patients with MHA. It may negate the use of DDAVP pre-exercise and could potentially lead to clinicians advising patients to appropriately warm-up to raise their FVIII/VWF levels prior to undertaking more rigorous sports. It will also lay the foundation for future studies investigating the interaction between aerobic exercise and hemostasis in subjects with bleeding disorders.
Effect of Exercise on Bone Mineral Density and Strength in Factor VIII Deficient Mice
Prevalence of Gross Motor Delays in Children with Hemophilia
The purpose of this project is to determine if children with hemophilia have gross motor delays. Gross motor skills include, but are not limited to walking, running, jumping, climbing, crawling, balancing, kicking, catching and throwing activities. The large muscles of the body are responsible for performing these types of activities. Strength, balance and coordination are needed to demonstrate and improve these skills. Children with hemophilia may experience internal bleeding in their joints or muscles, which limits their activity. Some children with hemophilia may be restricted from active play or sports for fear of getting an injury that could cause internal bleeding. When activity is restricted, there can be decrease in strength, balance and endurance. If a child has gross motor delays, it puts him at risk for injury when playing with his peers. Physical Therapy evaluations in the Hemophilia Treatment Center help determine changes caused by bleeding episodes. There are specific motor skills children master as they grow, which represent strength, balance and coordination. The comprehensive clinic visits do not allow time to complete an intensive gross motor assessment. Physical Therapists use Manual Muscle Testing, MMT, to grade the strength of each muscle group. MMT strength testing is not appropriate for young children and does not represent strength during functional activities. To accurately determine children's muscle strengths, a standardized gross motor test should be used. The PT at the Comprehensive Care Center for Inherited Blood Disorders will conduct gross motor evaluations in conjunction with the annual visit. The scores will be evaluated to determine which patients have gross motor delays, so they can be referred for therapy services. The BOT 2 is the standardized gross motor test that will be used to determine gross motor levels. The gross motor skills that will be evaluated include bilateral coordination, balance, running speed and agility, upper limb coordination and strength. All patients with hemophilia between the ages of 4 and 12 years will be eligible to be evaluated in the upcoming year with additional PT testing with their annual visit. Patients may be referred to therapy or given a home exercise program depending on the deficits noted during the assessments. The goal is to improve our standard of care at the HTC, by adding gross motor screening for our patients to ensure appropriate referrals are made for therapy services.
Identifying Fall Risk in Patients with Hemophilia
This research project will examine fall history and fall risk in patients with hemophilia. Multiple risk factors for falls identified in the general population are prevalent in the hemophilia population. Existing data suggest that fall rates may be higher and that fall risk may begin at an earlier age in patients with hemophilia. Identification of fall risk enables early intervention, thereby preventing injury and fear of physical activity, both of which have been associated with falling and may carry an increased risk in patients with bleeding disorders.
Gait Parameters of People with Hemophilia Compared to Normal Control Subjects
The objective of this study is to collect a large data base of gait parameters on individuals from the age of 12 months to 99 years old who do not have neuromotor deficits. This ongoing study will be the basis of comparison for people with hemophilia as a means to identify gait deficits that occur due to joint or muscle involvement from the bleeding disorder as compared to gender and age matched controls. We are using the GaitRite electronic walkway evaluation system as the quantitative measurement tool for gait analysis. Enrolled subjects are consented to this study and to the storage of data in a gait repository for future studies. This data will be available to other Hemophilia Treatment Centers upon written request to our Gait Repository Guardian (currently Dave Oleson, PT at the Hemophilia Treatment Center at CDRC in Portland, OR).