To have a well phenotyped cohort of people with sickle cell disease in order to examine risk factors for end organ disease through the creation of a multi-site registry and to develop a repository for the long-term storage of patient samples (whole blood, peripheral blood, serum) along with corresponding demographic and clinical information to allow for clinical and laboratory correlations.
The purpose of this study is to see if an investigational drug called pazopanib can improve nosebleeds and anemia in patients with hereditary hemorrhagic telangiectasia.
The goal of this study is to uncover the frequency of low oxygen levels during sleep in pregnant women that have severe sickle cell disease. These women have a high risk of complications during pregnancy, and low oxygen levels might contribute to the complications. Therefore, finding and treating low oxygen can be impactful. The study will also look at blood cells and assess how low oxygen affects them.
Aim 1: Deploy and evaluate our implementation facilitation program and toolkit on implementation success of infusion clinics in nine sites using the RE-AIM framework. Aim 2: Evaluate the impact of implementation of infusion clinics on secondary patient outcomes including time to first dose of parenteral pain medications, rate of hospitalizations, and patient satisfaction with pain management.
To develop an SCD Biochip with which to examine key cellular properties and interactions, including RBC and WBC cellular and adhesive properties, and circulating endothelial hematopoietic precursor cell characteristics. To correlate SCD Biochip function in heterogeneous SCD populations, including HbSS and HbSC at a range of ages, and in those with acute and chronic complications and compared with normal controls.
The purpose of this research study is to improve safety measures and reduce stressors associated with lumen hub-clave seizures when caring for patients with CVCs. The primary outcome of the pilot study is to document the types and frequency of workarounds employed, current disinfection techniques, and the stressors of those caring for and accessing CVCs.
Evaluate night time hemoglobin desaturation (NHD), as part of routine clinical care, in subjects with sickle cell disease (SCD
We want to better understand how and why the dosing of and response to hydroxyurea is different for different patients.
This study will evaluate the use of MMUD PBSC in adults and explore the safety and efficacy of MMUD BM in pediatric recipients with hematological malignancies who may lack other donor options.
To test the effect of automated RBC exchange transfusion and standard of care compared with standard of care on the number of episodes of clinical worsening of sickle cell disease (SCD)requiring acute health care encounters (non-elective infusion center/ER/Hospital visits) or resulting in death over 12 months in high risk adult SCD patients.