CFC International, with funding dedicated to Lillian’s Legacy, is accepting applications for scientific and/or clinical research studies related to the natural history, treatment, and management of CFC syndrome. Because the manifestations of the syndrome touch a wide range of specialty areas, from neurology to cardiology to dermatology to behavior to endocrinology, this RFP is designed to cast a wide net.
Grants will be awarded to qualified researchers to initiate small scientific research studies or clinical trials, the results of which could be used to obtain funding from the NIH, FDA, or other funding agencies or to attract a corporate sponsor. Procedures or proposed therapeutic trials may be new, based on recent biochemical or pharmacological evidence, or in the preliminary stages of clinical investigation. Evaluation of proposals will include careful consideration of protocol design, the objectiveness of parameters measured, and the statistical evaluation proposed. Protocols that will focus on the cause, natural history, early detection, diagnosis, or treatment (pharmacological, devices, surgery, or dietary) will be given priority. Priority will also be given, but not limited to, applicants with institutional IRB’s.
CFC International aims to partner with the applicant in research by providing access to the data in CFC International’s patient registry, actively supporting recruitment through its connections to the international CFC syndrome community, and through access to CFC International staff, board, research committee, and Medical Advisory Board.
