Breadth of Donor Options for People With Inherited Diseases Requiring Allogeneic Hematopoietic Stem Cell Transplant in the Era of Alternative Donor Transplants Using Post-Transplantation Cyclophosphamide
| Status: | Enrolling by invitation |
|---|---|
| Conditions: | Infectious Disease, HIV / AIDS |
| Therapuetic Areas: | Immunology / Infectious Diseases |
| Healthy: | No |
| Age Range: | 4 - 85 |
| Updated: | 4/6/2019 |
| Start Date: | April 10, 2019 |
| End Date: | April 19, 2019 |
Retrospective Study of the Breadth of Donor Options for Patients With Inherited Diseases Requiring Allogeneic Hematopoietic Stem Cell Transplant in the Era of Alternative Donor Transplants Using Post-Transplantation Cyclophosphamide
Background:
People who have certain immune system diseases often need a procedure called allo HSCT. This
is short for allogeneic hematopoietic stem cell transplant. This might cure people with these
diseases. Many people who need allo HSCT need donors who are relatives with similar genes.
But the disease may also affect those in the donor pool. This may mean there are fewer
options for people with inherited diseases. Researchers want to collect data on how
transplant candidates and their donors are found.
Objective:
To find out how genetic diseases and the ways they are inherited affect the breadth of
options for allo HSCT donors.
Eligibility:
Records from studies that have already been done. These will be for people ages 4 and older
who were evaluated for allo HSCT or to be donors.
Design:
Participants already signed a consent form for their records to be shared.
Researchers will study the participant data.
Data will be stored in an electronic system. Researchers will use passwords to protect the
data.
People who have certain immune system diseases often need a procedure called allo HSCT. This
is short for allogeneic hematopoietic stem cell transplant. This might cure people with these
diseases. Many people who need allo HSCT need donors who are relatives with similar genes.
But the disease may also affect those in the donor pool. This may mean there are fewer
options for people with inherited diseases. Researchers want to collect data on how
transplant candidates and their donors are found.
Objective:
To find out how genetic diseases and the ways they are inherited affect the breadth of
options for allo HSCT donors.
Eligibility:
Records from studies that have already been done. These will be for people ages 4 and older
who were evaluated for allo HSCT or to be donors.
Design:
Participants already signed a consent form for their records to be shared.
Researchers will study the participant data.
Data will be stored in an electronic system. Researchers will use passwords to protect the
data.
This protocol is a retrospective review of donor search results for patients with inherited
immunodeficiency diseases requiring allogeneic hematopoietic stem cell transplant (allo
HSCT).
The study will involve collecting information related to the donor search for transplant
candidates and their prospective donors, using records in CRIS, Crimson, the HLA lab, and
records in the transplant coordinator office (such as shipping logs of HLA typing kits). The
study will not involve the use of specimens or participant contact.
The participants whose records will be reviewed will be those who were evaluated for allo
HSCT or donation on an NIH primary immunodeficiency transplant protocol at a time when haplo
donors were eligible (March 30, 2012 to present for GATA2, January 1, 2015 for CGD, October
6, 2015 to present for 16-C-0003, and May 21, 2014 to present for DOCK8).
The Principal Investigators on the included protocols have granted permission to conduct this
study and have verified that none of the original protocols or informed consent documents
preclude such a review of clinical data.
immunodeficiency diseases requiring allogeneic hematopoietic stem cell transplant (allo
HSCT).
The study will involve collecting information related to the donor search for transplant
candidates and their prospective donors, using records in CRIS, Crimson, the HLA lab, and
records in the transplant coordinator office (such as shipping logs of HLA typing kits). The
study will not involve the use of specimens or participant contact.
The participants whose records will be reviewed will be those who were evaluated for allo
HSCT or donation on an NIH primary immunodeficiency transplant protocol at a time when haplo
donors were eligible (March 30, 2012 to present for GATA2, January 1, 2015 for CGD, October
6, 2015 to present for 16-C-0003, and May 21, 2014 to present for DOCK8).
The Principal Investigators on the included protocols have granted permission to conduct this
study and have verified that none of the original protocols or informed consent documents
preclude such a review of clinical data.
- Data Analysis Only
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