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URL: https://nfregistry.patientcrossroads.org/
Proper Citation: NF Registry (RRID:SCR_006277)
Description: A patient registry to identify people with neurofibromatosis (NF) who are interested in participating in clinical trials, as well as determining the commonality of specific characteristics of NF. The NF Registry is committed to secure methodologies and pioneering research that will lead to improving the health and well-being of individuals and families affected by NF. This registry has been created to collect data on large numbers of people with NF. This has never existed before and will help: * Identify people who may be eligible for clinical trials or other research studies being conducted in the field of NF. New clinical trials are launched each year yet challenges identifying participants too often mean that these studies finish late or never really get started. Today, 80 percent of trials fail to recruit enough volunteers within planned timelines. Under enrollment is one of the most significant problems facing NF drug development. Together, we can solve it. * Determine the commonality of specific NF characteristics. This will help researchers and doctors devise better ways to care for people with NF If you or your child has been diagnosed with neurofibromatosis (NF) please join the NF Registry today. It''s quick, it''s easy, and it matters. The key to treatments lies within you researchers can''t deliver treatments without committed volunteers.
Abbreviations: NF Registry
Synonyms: Children''s Tumor Foundation NF Registry, Neurofibromatosis Registry, CTF NF Registry
Resource Type: patient registry, people resource
Keywords: clinical trial, research study, adult human, child
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Source: SciCrunch Registry
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