This study will evaluate a new blood test which can detect organ rejection in patients who have had a kidney transplant. Blood samples will be obtained from subjects after consent and again up to 90 days afterward to test for transplant rejection.
The purpose of this study is to better understand what people think about genetic testing for kidney transplant. The study will be conducted at 3 transplant research centers. Participants will be asked to fill out a questionnaire about attitudes toward genetic testing and will also be asked questions about how easy the survey itself is to understand.
This study is for patients that have been diagnosed with multisystem Langerhans cell histiocytosis (LCH). The purpose of this study is to find out if prolonging the treatment and adding a drug called 6-mercaptopurine will be beneficial. Other goals include fining out if these changes will result in fewer patients having relapse of their LCH, and fewer patients having long term disease related problems. Participants can expect to be in this study for up to 24 months and will be followed on this study fir at least 5 years.
The purpose of the study is to generate a bio bank of specimens for research. We will tissue that would otherwise be discarded from clinical or surgical procedure and information from medical records. We will also collect discarded blood, urines and sputum. Collecting samples will help to better understanding the mechanisms of cardiovascular diseases, identify biomarkers for early diagnosis and to predict safety and efficacy of new therapies.
The purpose of this study is to gain knowledge from 10-15 minute key informant interviews (pre- and post-transplant recipients) in regards to their experience with pain and pain management. We will interview key informants on their attitudes and perceptions towards using mobile technology to track pain and pain management after surgery and providing educational resources for appropriate pain management.
We will study how well the relatively new FDA approved pneumonia vaccine can protect older renal transplant recipients against pneumococcal illness. We will specifically study the group of renal transplants in whom the cause of renal failure was either diabetes mellitus II and/or hyoertension. We will compare the findings against those we find in younger renal transplant recipients, older healthy individuals and older persons with diabetes but normal kidney function. Healthy younger individuals will serve as controls for optimal vaccine response.
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.
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.