Kidney transplant, especially from a living donor, affords End Stage Renal Disease (ESRD) patients the opportunity for increased survival and improved quality of life. Potential recipients are not likely to identify living donors as a believed consequence of lack of awareness and limited knowledge regarding living kidney donation. We propose to utilize a social media coach to help ESRD patients to utilize Facebook to tell their ESRD story, to post accurate information and links to data on ESRD, renal transplantation and living donation with the goal of increasing interest in social media 'friends' to become a living donor.
This is a multi-center, longterm safety and efficacy follow-up study for subjects who have been treated with the LentiGlobin BB305 drug product on HGB-206 sickle cell gene therapy parent study. This study is observational only, and no investigational treatment will be given on this follow-up study. Participants for this study are requested to follow-up every six months for the first three years and then once every year for the remaining Year 4 through Year 13, totaling thirteen years in this longterm study. Study assessments will include exams, laboratory studies, imaging, ECG, surveys, and record review.
This is a medication safety study in kidney transplant recipients. Subjects will be provided with home monitoring devices and a mobile health application to improve medication safety.
This study is being conducted to assess safety and efficacy of bone marrow transplant in less severely affected children. In this study, we will transplant bone marrow or cord blood from a HLA-matched brother or sister instead of the currently more common method with a HLA-identical sibling donor. This is a multicenter, single arm trial for patients between 2 and 10 years of age who have less severe HbSS or sickle beta zero thalassemia. Patient must have an HLA identical sibling donor who is less than 10 years old and who does not have HbSS, SC or sickle beta zero thalassemia.
This study is for patient that have been diagnosed with suspected lower respiratory tract infection. The purpose of this study is to evaluate a new test that may be able to find more lung infections than current tests can. This new test is called next-generation sequencing and looks in respiratory secretions for bacteria, viruses, fungi, and other organisms that may cause infection. We hope to learn more about the usefulness of this new test in identifying infections.
This study is meant to compare transplant to standard care (regular care) for sickle cell patients. By comparing the health outcomes for patients who receive bone marrow transplant to those patients who receive standard of care, this study will be able to determine whether the two treatments are the same, or if one is better than the other.
This study is for patients who have received a kidney, liver, or pancreas transplant and who have developed resistant Cytomegalovirus infection. There will be two treatment groups to compare the improvement or resolution of Cytomegalovirus infection. Subjects will be randomized to receive 8 weeks of either the investigational drug, Maribavir, or physician assigned standard of care treatment.
The purpose of this research study is to learn more about the outcomes of total pancreatectomy with islet autotransplantation (TPIAT). Total pancreatectomy is the removal of the pancreas and islet autotransplantation is the placement of the insulin producing cells back into you to prevent diabetes. This study is looking to enroll patients who are scheduled to have a TPIAT surgery to treat pancreatitis (inflammation and scarring of the pancreas).
In addition to the routine care for pancreatitis and TPIAT surgery, participation in this study will involve completion of some brief surveys about the subject's health before TPIAT, at 6 months after TPIAT, and each year after the TPIAT surgery for 4 years, as well as a lab test conducted at each of the follow-up visits.
This study is for participants who have been diagnosed with cancers of the blood who do not have a related perfect tissue "match" for BMT. This research is being done to find out if a bone marrow transplant (BMT) from a relative who is not a perfect tissue match is safe and effective in people with cancer. The primary goal of this study is to use chemotherapy and/or radiation therapy to completely get rid of a person's existing bone marrow, give them new bone marrow from a relative who is not a perfect tissue match, and then give them two doses of additional chemotherapy shortly after receiving the new bone marrow. Participants can expect to be in this study for up to 2 years.