Publication date: 24 Aug 2018
What is RGTF?
Rare Genomics Task Force (RGTF) is Rare Genomics Institute's novel rare disease scientific consultation platform where you can have your questions answered by experts. We are building this platform to efficiently share biological information and data between patients and researchers to expedite the discovery process as part of our overall mission to help bring diagnoses, treatments, and cures to rare disease patients.
We have established a secure platform through Patients Know Best (PKB), which makes it convenient for patients to share their clinical information with our research community at will. We are striving to build infrastructure that would support delivery of patient specimens for researchers who have agreed to help on a case and conduct further analyses.
If you have questions about a rare disease for RGTF, please fill out the form in the following link: https://www.raregenomics.org/rgtf/. Once the form is submitted, you will receive a confirmation e-mail. RGTF enrollees will be assigned an RG patient advocate and an RGTF scientist to manage their case. Our team is committed to advancing projects as quickly as possible. Although RG does not provide a medical diagnosis, the RGTF team seeks to provide the latest scientific information regarding the research on your particular condition.
What to expect from RGTF?
Patients who enroll in RGTF should do so with the following possible outcomes in mind.
1. We may connect you with physicians, researchers, and/or patient advocacy groups who are willing to work on various aspects of your case.
2. Our network of researchers may be able to identify ideas, experiments, analyses, or existing studies, which may be options for you and your clinician to explore.
3. We may be unable to identify a researcher suitable for your particular case. In this scenario you will be provided with a scientific report generated by our science team that includes a summary of the relevant scientific literature and potential ideas or experiments that may help elucidate your case.