This Request for Proposal (RFP) is for the creation of a logo and branding guidelines for the Rare Disease Cures Accelerator-Data and Analytics Platform (RDCA-DAP®), a project led by Critical Path Institute (C-Path) and the National Organization for Rare Disorders (NORD) with funding and support from the U.S. Food and Drug Administration (FDA) [Critical Path Public-Private Partnerships Grant Number U18 FD005320 from the U.S. Food and Drug Administration].
RDCA-DAP provides a centralized and standardized infrastructure to support and accelerate rare disease characterization, with the goal of accelerating therapy development across rare diseases.
RFP Sent On/After: Sept. 29, 2021
Responses Due: Oct 13, 2021
Send any questions on the RFP and proposals to: Lesli Nordstrom, Director of Marketing and Communications at [email protected].
Winner selected and contacted no later than: Oct 20, 2021.
Project Overview
Over 300 million people in the world have one of more than 7,000 rare diseases. In the United States a rare disease is defined as one affecting fewer than 200,000 people. The Orphan Drug Act in the U.S., and similar laws in other countries, have created incentives for companies to develop treatments for these “orphan diseases,” named so because few drug companies at the time were interested in developing treatments for such small populations of patients. Today, many new drug targets have been identified and new products are in development thanks in part to the incentives provided by the Orphan Drug Act.
Nonetheless, more than 90% of rare diseases still lack an FDA-approved treatment, and drug development is frequently slowed by the low numbers of patients and limited understanding of the variability and progression of each disease. This means that the design of clinical trials that can reliably evaluate the efficacy and safety of a potential therapy is challenging. Developing a clear understanding of how each disease progresses, as measured by defined outcome measures and/or biomarkers, would allow development of clinical trial protocols that could efficiently determine if a new therapeutic was effective or not. This would accelerate clinical development, make it less expensive, and encourage new companies to develop rare disease drugs.
A New Data and Analytics Platform
The Rare Disease Cures Accelerator-Data and Analytics Platform (RDCA-DAP®) is an FDA-funded initiative that provides a centralized and standardized infrastructure to support and accelerate rare disease characterization, with the goal of accelerating therapy development across
rare diseases. This platform is made possible through a collaborative grant from the FDA [Critical Path Public-Private Partnerships Grant Number U18 FD005320 from the U.S. Food and Drug Administration].
RDCA-DAP promotes the sharing of existing patient-level data and encourages the standardization of new data collection. By integrating such data in a regulatory-grade format suitable for analytics, RDCA-DAP accelerates the understanding of disease progression (including sources of variability to optimize the characterization of subpopulations), clinical outcome measures, and biomarkers, and facilitates the development of mathematical models of disease and innovative clinical trial designs. RDCA-DAP is positioned to generate solutions to
drug development bottlenecks. As such, the utility of the patient-level data is maximized, and data may be used to develop tools that will be accessible to the community in order to optimize and accelerate drug development across rare diseases.
How RDCA-DAP Works
RDCA-DAP houses integrated patient-level data from diverse sources, including clinical trials, longitudinal observational studies, patient registries, and real-world data (e.g., electronic health records) across a multitude of rare diseases. Data are contributed from different organizations and companies around the world. C-Path has extensive experience in building such integrated databases for many diseases, including existing rare disease databases (in Duchenne muscular dystrophy, Huntington’s disease, Friedreich’s ataxia, and polycystic kidney disease). C-Path has partnered with NORD to leverage its IAMRARE® registry platform and extensive expertise to help identify data contributors and establish contacts with the contributing organizations. C-Path will negotiate data contribution and use agreements to allow patient-level data to be transferred to the RDCA-DAP, standardize and integrate the data with other contributed data, and make it
available to the degree agreed to by the data contributors.
About C-Path
Critical Path Institute (C-Path) is an independent, nonprofit organization established in 2005 as a public and private partnership. C-Path’s mission is to catalyze the development of new approaches that advance medical innovation and regulatory science, accelerating the path to a
healthier world. An international leader in forming collaborations, C-Path has established numerous global consortia that currently include more than 1,600 scientists from government and regulatory agencies, academia, patient organizations, disease foundations, and dozens of
pharmaceutical and biotech companies. C-Path U.S. is headquartered in Tucson, Arizona and C- Path, Ltd. EU is headquartered in Dublin, Ireland, with additional staff in multiple other locations. For more information, visit c-path.org and c-path.eu.
About NORD
The National Organization for Rare Disorders (NORD®), an independent nonprofit, is leading the fight to improve the lives of rare disease patients and families. We do this by supporting the rare community – its people and organizations. Leveraging our 38 years of leadership and experience, we work together with the rare community to accelerate research, raise awareness, provide valuable information and drive public policy that benefits the estimated 25-30 million Americans impacted by rare diseases.
Our Audience
Our audience is complex. It includes those directly affected by rare diseases and their caregivers, as well as those serving them. There are two key sub-sections in our audience. They are:
- DAP Data Contributors: Patient Organizations, Industry, Researchers, Academia
- DAP Consumers/Researchers: Industry, Researchers, Academia, Regulators
Regardless of which stakeholder we are speaking to, we prioritize clear and straightforward communications that demonstrate a sensitivity to the issues those living with a rare disease may face every day in dealing with their condition. We strive to be patient-centered in all we do and to keep our voice compassionate, responsive and informative.
Brief Description of Required Services
The objective of this assignment is to create a visual identity/logo and brand guidelines for the
platform itself.
Resources
Link to the RDCA-DAP homepage: https://c-path.org/programs/rdca-dap/
Link to NORD’s support page for RDCA-DAP: https://rarediseases.org/rdca-dap/
Link to most recent annual meeting: https://bit.ly/3hXlQmF
Expected Deliverables
The contractor/vendor will be responsible for following the core features of the assignment:
- Working with the team to create a visual identity for the platform
- Creation of an implementation plan and facilitation of roll out of the new visual elements
- Complete to the satisfaction of the C-Path and NORD teams three rounds of ideation on all creative elements to arrive at a final, acceptable deliverable(s).
Proposed Timeline
Discovery 10/20-10/27
Ideation* 10/27-11/24
Implementation 11/29-12/10
*To include three rounds of edits; three or more initial concepts for consideration expected
Proposal Requirements
Please include the following in your proposal response:
- Overview of you/your company
- Brief overview of how you will meet our objectives
- Samples of work
- References
- Pricing
- Terms and conditions
Anticipated budget
$60,000 – $80,000
Thank you for your interest in responding to this RFP with a proposal for the RDCA-DAP visual identity development. We look forward to your response. If you have any questions, please contact Lesli Nordstrom at [email protected].
