The House Calls (HC) program is an education study to address needs of minority end stage renal disease (ESRD) patients and their immediate support network to promote living kidney donation. It requires a HC educator to give a 60-90 minute education session in the patient's home or common location. The study is 3 years long and will comprise of 374 Black end stage renal disease patients who are on the kidney transplant waitlist or are being evaluated as waitlist candidates. Participants will be randomized to a usual care arm, a HC arm, or a HC plus a twice a week support mentor (via National Kidney Foundation) who will be in contact every two weeks. This study will recruit patients from Beth Israel Deaconess Medical Center in Boston, MA and the Medical University of South Carolina in SC.
Live donor kidney transplantation (LDKT) offers the most optimal survival and quality
of life benefit for those with late-stage chronic kidney disease. However, one-third of potential donors who volunteer to undergo evaluation on behalf of an intended recipient are blood-type or cross-match incompatibility. Kidney paired donation (KPD) was developed as a strategy to provide these incompatible donor-recipient pairs with an innovative opportunity for LDKT, yet its uptake by potential donors and their intended LDKT recipients is not optimal. In this study, we will evaluate the
effectiveness of a targeted video intervention designed to address common concerns
about KPD on the knowledge of KPD risks and benefits, KPD self-efficacy, and KPD
concerns in incompatible potential donors and their intended recipients.
A sample of patients will be drawn from a cross-sectional cohort of pre- and post-abdominal and cardiothoracic transplant recipients from March 2018 through May 2018. 10 to 15 minute key informant interviews will be conducted with patients to ascertain their views and perceptions related to adherence pre- and post-transplant and use of technolgy. This data will be used to educate the transplant community about adherence from the patient's perspective.
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.