HudsonAlpha Genomics Services Lab
The HudsonAlpha Genomics Services Lab, established by the non-profit HudsonAlpha Institute for Biotechnology, offers cutting-edge genetic research tools to both academic and commercial customers. The HudsonAlpha Institute for Biotechnology connects research-driven discovery, education, genomic medicine, and entrepreneurship to generate major discoveries that have impacted disease diagnosis and treatment, created intellectual property, fostered biotechnology companies, as well as expanded the number of biosciences-literate people, many of whom will take their place among the future life sciences workforce. Additionally, HudsonAlpha has created one of the world’s first end-to-end genomic medicine programs to diagnose rare disease. CTF uses HudsonAlpha’s Genomics Services Lab in relation to the CTF Biobank, conducting in-depth analyses and characterizations of dermal neurofibromas.
National Biomarker Development Alliance
Hosted by the Arizona State University (ASU) Foundation, the National Biomarker Development Alliance (NBDA) is a nonprofit 501(c)(3) organization dedicated to creating solutions to the major problems that plague every phase of biomarker discovery and development. Launched in 2014, NBDA’s major goals are to create end-to-end systems (driven by best practices, guidelines standards, etc.) to enable the development of “fit for purpose” biomarkers - to advance precision medicine. The NBDA works through specialized disease-focused centers, partnerships, and trans-sector networks to go beyond problem identification to achieve real solutions. The NBDA’s intent is not to “tweak” established systems, but rather to implement and/or develop innovative approaches and models that can be transformative to the biomarker field for the benefit of patients.
CTF has created a plan with the NBDA to help fund Biomarkers for NF—another groundbreaking initiative that could change the lives of those living with NF.
National Diseases Research Interchange
The National Diseases Research Interchange (NDRI) is a nonprofit organization dedicated to providing the highest quality human biomaterials for research. By serving as the liaison between tissue and organ donors and the scientific community, NDRI is uniquely positioned to support breakthrough research. NDRI serves scientists with customized biomaterials for use in studies to understand human disease. The CTF Biobank is made possible through a partnership with NDRI and its Rare Disease Partnership program.
Neurofibromatosis Therapeutic Acceleration Program
Neurofibromatosis Therapeutic Acceleration Program (NTAP), housed at Johns Hopkins University School of Medicine, is a privately funded nonprofit organization dedicated solely to developing effective treatments for patients with NF1-associated plexiform neurofibromas. Its programs span exploratory research through clinical trials and marketing approval, to ensure patients benefit from innovative research as quickly as possible. CTF collaborates with this organization in order to accelerate the research and drive treatments for NF1-associated plexiform neurofibromas.
PatientCrossroads is the long-time leader in the field of patient-entered registries. They currently offer registries for more than 400 conditions, on behalf of leading advocacy and research institutions, NIH, and Fortune 500 companies. PatientCrossroads is, as the trusted third-party gatekeeper of registry information, gathering data and ensuring its accessibility. The de-identified information is made broadly available to the greater medical community. CTF has partnered with PatientCrossroads to store information from the NF Registry safely, securely, and privately.
Sage Bionetworks is a nonprofit organization that aims to improve the understanding and treatment of human disease through data-driven predictive modeling. CTF has partnered with this exceptional center to drive the Synodos for NF1 and Synodos for NF2 projects. Sage conducts a detailed analysis of the data from the participating Synodos scientists and researchers, and disseminates this data to the Synodos teams. By partnering with Sage, the Foundation ensures that all scientists and researchers share their scientific successes and failures in real-time, and that data is stored in a universal and consistent format, and is available publicly.