The goal of this research is to combine non-invasive brain and sensory nerve stimulation to investigate their influence on hand function. Many adults with hemiplegic CP no longer actively receive therapies but have further hand goals they want to achieve. The information we learn from this study may help us learn how to design future interventions to help…
Dance is a complex activity involving the integration of rhythm, spatial patterns, synchronization to external stimuli and whole-body coordination. While regular exercise is often recommended for people with Huntington's Disease (HD), there are no studies examining the use of dance to improve balance and mobility and positively affect the quality of…
The DIMENSION Study is evaluating the safety and effect on cognitive symptoms of an investigational oral drug in adults with early Huntington's disease. Cognitive symptoms may include difficulty paying attention or trouble thinking through steps of an activity or complex problems. Symptoms may also include difficulty planning, remembering, and staying…
The purpose of this study is to find out if the study medicine called EDIT-301 will help in the treatment of Severe Sickle Cell Disease (SCD) and how safe it is to be used in people. EDIT-301 (study medicine) is a new investigational therapy which uses the patient's own stem cells, modifies them by CRISPR technology, and infuses them back to the…
The purpose of this study is to learn about whether the study drug (PF-07209326) is safe and effective in people with sickle cell disease and learn about what the right dose is. We will look at drug levels in the blood, see how fast drug levels rise and fall, and what effects the drug has, all of which are known as the pharmacokinetics (PK) and…
The purpose of this study is to: 1. Determine if a tele-rehabilitation home exercise program is helpful in promoting adherence to an exercise program in adults with CP and 2. to determine if a tele-health exercise program improves fitness and functional mobility in adults with CP. This study involves participation in a 10-week remote (Zoom) program to…
Ambulatory youth with cerebral palsy (CP) aged 8-16 years old are invited to participate in a virtual reality (VR) game play session to learn about youth motivation and satisfaction with VR to promote fitness and mobility. The session will be approximately 2 hours and will be conducted in the Programs in Physical Therapy (PT) PACE Lab @ 617 W. 168th St.,…
We are looking for adults with cerebral palsy who are 18 and over for ultrasound study of nerves at the wrist. We are assessing the symptoms of Carpal Tunnel Syndrome in adults with cerebral palsy. The study will involve a survey to describe their medical history, procedures (especially of the arms), use of adaptive equipment (such as walkers, wheelchairs…
This study is being done to see if giving your child a lower dose of chemotherapy (drug therapy), than has been used historically in bone marrow transplant, to kill his/her own diseased cells before he/she receives a bone marrow transplant, will possibly result in the permanent control of your child's sickle cell disease. Patients will receive busulfan…
The purpose of this research study is to find out whether a new investigational drug called SRX246, which might be useful to Huntington's Disease (HD) patients who sometimes feel irritable, angry, or even aggressive, is well tolerated and safe when it is given two times a day by mouth at doses as high as 160 mg. As part of this study, we will use a…
The purpose of this research is to learn how to help parent youth pairs work together to help youth with sickle cell disease take hydroxyurea every day as a daily habit. This study is for children and teens ages 10-18 with Sickle Cell Anemia taking hydroxyurea, and their parents (or guardians). Many children and teens do not use hydroxyurea every day. Daily…
Abnormal muscle tightness -known as spasticity- in the leg can happen when a child has cerebral palsy. If your child has spasticity, they may find it difficult to straighten their leg and experience stiffness. The goal of this study is to collect information from participants about the safety and effectiveness of using BOTOX to treat arm and hand spasticity…
Abnormal muscle tightness -known as spasticity- in the arm and hand can happen when a child has cerebral palsy. If your child has spasticity, they may find it difficult to straighten their hand and/or arm and experience stiffness. The goal of this study is to collect information from participants about the safety and effectiveness of using BOTOX to treat…