MODIFICATION
R -- Research Support Services for the Genetic and Rare Diseases (GARD) Information Center and Its Inter-Related Initiatives
- Notice Date
- 2/13/2019
- Notice Type
- Modification
- NAICS
- 541990
— All Other Professional, Scientific, and Technical Services
- Contracting Office
- 6001 Executive Boulevard Room 4211, MSC 9559 Bethesda MD 20892-9559
- ZIP Code
- 20892-9559
- Solicitation Number
- 75N95019R00031
- Response Due
- 2/22/2019
- Point of Contact
- Mark E. McNally, Contract Specialist, Phone (301) 827-5869, - Jeffrey Schmidt, Contracting Officer, Phone (301) 402-1488
- E-Mail Address
-
mcnallyme@mail.nih.gov, schmidtjr@mail.nih.gov
- Small Business Set-Aside
- N/A
- Description
- THIS REQUEST FOR INFORMATION (RFI) IS NOT A REQUEST FOR PROPOSAL (RFP) OR AN OBLIGATION ON THE PART OF THE FEDERAL GOVERNMENT AND THE NIH. THE GOVERNMENT DOES NOT INTEND TO AWARD A CONTRACT BASED ON THIS RFI OR TO OTHERWISE PAY FOR THE INFORMATION SOLICITED. Key Date: All responses must be received on or before 05:00 p.m., Eastern Standard Time, February 22, 2019. This posting will remain open until further notice. Future deadlines to submit questions and comments may be added via an amendment to this posting. Issued By: National Institutes of Health (NIH), National Center for Advancing Translational Sciences (NCATS), Office of Rare Diseases Research (ORDR) Purpose: This RFI is for market research only to formulate a procurement strategy to obtain research support services. NCATS wishes to continue operation of the Genetics and Rare Disease (GARD) information center and its inter-related initiatives including the provision of a variety of additional research-support services. The support services include providing the day-to-day management of GARD and its inter-related initiatives to include the NCATS Toolkit for Patient-Focused Therapy Development Project, the NCATS Rare Diseases Registry (RaDaR) Program, NIH-sponsored or co-sponsored scientific gatherings focusing on NCATS rare diseases initiatives, and other initiatives that will evolve as part of this requirement. Background: NIH is the nation's leading medical research agency and the primary federal agency whose mission is to seek fundamental knowledge about the nature and behavior of living systems and the application of that knowledge to enhance health, lengthen life, and reduce illness and disability by supporting and making medical discoveries. NCATS is the only center at the NIH that focuses exclusively on all aspects of the translation of research with an innovative pipeline of treatment discoveries for all diseases. NCATS brings together a diverse group of scientists to translate basic science conducted elsewhere into products and services that help improve people's health and lives. NCATS' mission is to improve health through smarter science that results in better treatments faster for all diseases, rare or common. For the last 16 years, ORDR, a part of NCATS, jointly with the National Human Genome Research Institute (NHGRI), has funded the GARD information program. The program is meant to foster the generation and maintenance of information for and about research on rare diseases, and to stimulate vibrant partnerships with patient groups and other constituencies in the rare disease community. Currently, there are about 7,000 known rare diseases that affect people in the United States, yet only a few hundred (less than five percent) have a treatment, and even fewer a cure. A disease is characterized as rare when it affects fewer than 200,000 people. While developing treatments for any complex, chronic and severe disease is challenging, developing treatments for rare diseases presents additional difficulties and has many barriers in the translational development process aimed at treatments. To this day, accurate, comprehensive, timely, and easy to understand information about a rare disease is difficult to find and is hardly ever available in any one place. It is for these reasons that NCATS supports the GARD information program. ORDR acts as a convener to bring together the rare diseases community to develop a tools collection such as the NCATS Toolkit for Patient-focused Therapy Development ("Toolkit Project") and the NCATS RaDaR Program. The Toolkit Project brings together, on the GARD website, information on the process of developing a high-quality research program and data collections; and helps shepherd more efficiently and successfully projects through the treatment development process. The research support services for GARD include: • Developing, implementing, and maintaining an effective project planning and management process for the operation of the GARD information center and backside parts of the website including the portals for the Toolkit and link to RaDaR to ensure quality performance; • Maintaining an electronic inquiry tracking system to record and track all inquiries and responding to all inquiries, whether they are hand-written and mailed, e-mailed, sent via social media, by telephone or received directly or assigned to GARD by NCATS; • Updating the NCATS/GARD website: https://rarediseases.info.nih.gov/; • Providing support for scientific or otherwise rare diseases-related workshops, meetings, and relatively informal, small gatherings of experts at the National Institutes of Health, the Washington metropolitan area and outside of the Washington metro area including internationally. • Providing design, illustration, and typography, layout, production, printing and duplication services upon request by NCATS; • Conducting communications research in English or Spanish to better define GARD's priority audiences, determine their information needs, and determine effective strategies and channels for communicating with these audiences; • Supporting a comprehensive coordinated approach for NCATS to assist constituents of the rare disease community including researchers with information about standards to establish patient registries that are feasible, sustainable, and result in high quality data to advance clinical research and therapy development; • Assisting NCATS in bringing together members from multiple parts of the rare diseases research community, including researchers, patient groups, private sector and Federal entities and standards development organizations to harmonize and operationalize existing standards, and to develop guidance on registry design and conduct; and • Providing support for the identification and improvement of standards for use in the construction of registries for rare diseases, and development of guidance for how to design and conduct registries likely to yield interpretable data. NOTE: THIS NOTICE WAS NOT POSTED TO FEDBIZOPPS ON THE DATE INDICATED IN THE NOTICE ITSELF (13-FEB-2019); HOWEVER, IT DID APPEAR IN THE FEDBIZOPPS FTP FEED ON THIS DATE. PLEASE CONTACT 877-472-3779 or fbo.support@gsa.gov REGARDING THIS ISSUE.
- Web Link
-
Link To Document
(https://www.fbo.gov/spg/HHS/NIH/NIDA-01/75N95019R00031/listing.html)
- Record
- SN05221780-F 20190215/190213230059 (fbodaily.com)
- Source
-
FedBizOpps Link to This Notice
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