Senior Advisor

Statement of Work Details

Other

• Provide advice and guidance to the leadership and staff of the Office of Rare Diseases Research ORDR located in the extramural program of NCATS 1
• Provide analyses evaluations technical assessments feedback and support in the planning and implementation of activities related to translational and clinical research with focus on rare diseases to ORDR staff and other NCATS staff and leadership 2
• Engage with NCATS intramural and extramural staff senior staff at other NIH Institutes and Centres rare diseases patients their families and advocacy groups the rare disease research community academia industry partners and other rare disease stakeholders with the aim of bringing more therapeutics to people affected by rare diseases more efficiently and faster 3
• Identify and respond to scientific opportunities and build national and international research collaborations
• Determine solutions to overcome barriers fill needs respond to scientific opportunities and develop collaborative solutions
• Work with ORDR staff to maximize the impact of biomedical research on the health of people affected by one of the approximately6500 rare diseases known today few of which have available therapeutics
• Provide input on ORDR responses to emerging and new needs of the rare diseases patient community
• Devise and implement new rare disease translational research and activities jointly with ORDR staff
• Provide advice and input on current rare diseases programs and activities in ORDR and elsewhere in NCATS including o The Rare Diseases Clinical Research Network RDCR No The Global Rare Diseases Patient Registry and Data Repository GRDR a patient registry and data repository with fully developed Common Data Element so Partners in rare diseases research within NIH ICs other parts of the Federal government and with all components of the rare diseases community including industry academia and patient advocacy organizations
• Provide advice on NCATS extensive scientific conferences program in collaboration with other NIH Institutes and Centres
• Provide input on complex inquiries to the Genetic and Rare Diseases Information Center
• Provide advice on approaches to effectively engage patient advocacy groups regarding partnerships in biomedical research
• Gather and analyze information about structural and functional processes and programs
• Prepare reports letters and other documents reviewing programs policies and activities
• Review plans for future programs based on draft and final forms
• Participate in and prepare notes on teleconferences for discussion with management and senior program staff- Prepare outlines for new and needed projects
• Prepare summaries of recommendations for program changes adjustments improvements etc-
• Maintain a record of teleconferences in lieu of face-to-face meetings

Deliverables

• Work products and documents related to providing advice and guidance to staff; provide analyses evaluations technical assessments feedback and support; engage with others with the aim of bringing more therapeutics to people affected by rare diseases. - Ad-Hoc
• Work products and documents related to identifying and responding to scientific opportunities; build collaborations; work with staff to maximize the impact of biomedical research on health; provide input on ORDR responses to emerging and new needs.
• Ad-Hoc Work products and documents related to advice and input on current rare diseases programs and activities; provide advice on extensive scientific conferences program complex inquiries approaches to effectively engage patient advocacy groups.
• Ad-Hoc Work products and documents related to gathering and analyzing information; prepare reports summaries letters and other documents; review plans for future programs; participate in and prepare notes on teleconferences; prepare outlines for new and needed projects. - Ad-Hoc