Genetic Testing Program
What is the sponsored testing program?
The North American Immuno-Hematology Clinical Education & Research (NICER) consortium has collaborated with Blueprint Genetics to develop the Comprehensive Immune Cytopenia (CIC) panel, which is a 642-gene panel inclusive of a broad range of immuno-hematologic disorders, including primary immunodeficiency, bone marrow failure, complement disorders, autoinflammatory disorders, and cytopenias. The NICER sponsored testing program covers the cost of this CIC panel for eligible patients.
How does the sponsored testing program align with the goals of NICER?
The mission of the NICER consortium is to provide a collaborative multidisciplinary environment to advance the education, clinical care, and research involving pediatric and adult patients with immuno-hematologic disorders. One of the primary goals of the consortium is to create a patient registry with centralized genetic sequencing data.
What are the requirements to be eligible for sponsored testing program?
Patients must be referred by a NICER institutional member in order to qualify for this sponsored testing. The target population is patients with hematologic and/or immunologic presentations, but without a definitive diagnosis, in which genetic testing will aid in diagnosis. Patients must also consent to the NICER patient registry to be eligible for testing, in which de-identified clinical and laboratory data will be stored for future research in the NICER community. Patient registry and sponsored testing programs will be regulated through a central Institutional Review Board (IRB) at the University of Michigan.
How will results of the sponsored genetic testing be used?
The test results will provide immediate diagnostic benefits, with implications for personalized treatment decisions for patients on the NICER registry. It will also lead to a sequencing database for future NICER research, thereby facilitating our scientists’ ability to discover new genetic determinants of disease. Our goal is for all NICER research projects involving genetic sequencing panels to utilize this sponsored testing program to streamline the process and centralized the data.
How is the sponsored genetic testing program funded?
Funding for the NICER sponsored genetic testing program will be primarily through philanthropic efforts, championed by Friends of NICER, a 501c3 nonprofit established to support NICER and its core missions. Donors may be patrons, participants, or partners; to learn more visit friendsofnicer.org.
I want to donate; can I select a specific patient population?
Every dollar donated will go directly to the cost of genetic sequencing for a patient in need. This will help fund testing for multiple diagnostic categories, including bleeding disorders, recurrent infections, increased inflammation, and cancer. While donors can indicate their preferences on diagnostic categories to support, NICER will prioritize funds to those in need. There will also be the option to donate funds to specific research studies if applicable.