NCATS Rare Diseases Are Not Rare! 2020 Challenge Details

Submissions for this Challenge are now closed. View the winners and honorable mentions.

• Dates and Deadlines
• Subject of the Challenge Competition
• Rules for Participating in the Challenge
• The Prize
• Evaluation and Winner Selection
• Submission Requirements and Instructions

Summary

Image Credit: Tiina Urv, NCATS

The National Center for Advancing Translational Sciences (NCATS), part of the National Institutes of Health (NIH), continues to seek innovative ways to communicate with others and educate people about rare diseases through social media or art. The goal of this Challenge, which is being led by NCATS’ Office of Rare Diseases Research (ORDR), is fourfold: First and foremost, it is to raise awareness for all rare diseases in a collective manner (e.g., drawing attention to common challenges, needs or potential solutions). Second, it is intended to bring attention to the many people with rare diseases. Third, it is to highlight the need for research and the development of new treatments. Finally, through the process of creating an entry, it is highly encouraged to build and foster collaborations across the community.

The first “NCATS Rare Diseases Are Not Rare!” Challenge was launched in 2018 to raise awareness about rare diseases through creative means. See a list of the winning teams that were selected in winter 2018. ORDR is re-launching the NCATS Rare Diseases Are Not Rare! Challenge in 2020. You can help us get the word out by competing in our rare disease prize competition!

Cash prizes for first, second and third place winners are $3,000, $1,500, and $500, respectively. All winners and five honorable mentions will be posted on the NCATS public website.

Evaluation criteria that judges will be asked to address are specified below (see Evaluation Criteria under Basis Upon Which Submissions Will Be Evaluated).

Dates and Deadlines

Entries must be submitted by email to RDChallenge@nih.gov by 5:00 p.m. EDT on June 15, 2020.

The Challenge Begins: February 29, 2020
Submission Period: February 29, 2020–June 15, 2020
Judging Period: June 16, 2020–July 16, 2020
Winners Announced: Summer 2020

For Further Information

Contact Alice Chen, M.D., NIH (alice.chen2@nih.gov; 301-827-2015), or send an email to RDChallenge@nih.gov.

The IC’s Statutory Authority to Conduct the Challenge

The general purpose of NCATS is to coordinate and develop resources that leverage basic research in support of translational science and to develop partnerships and work cooperatively to foster synergy in ways that do not create duplication, redundancy, and competition with industry activities (42 USC 287(a)). To fulfill its mission, NCATS supports projects that will transform the translational process so that new treatments and cures for diseases can be delivered to patients faster by understanding the translational process and to create a basis for more science-driven, predictive and effective intervention development for the prevention and treatment of all diseases. NCATS supports rare disease patients and their communities by providing translational research funding, tools and other resources that help address their unique challenges. It is beneficial to all stakeholders for NCATS to optimize the communication tools available to support effective information dissemination and education. NCATS is also conducting this Challenge under the America Creating Opportunities to Meaningfully Promote Excellence in Technology, Education, and Science (COMPETES) Reauthorization Act of 2010, 15 U.S.C. 3719. In line with these authorities, this Challenge will lead to innovative ways to communicate with others and to educate people about rare diseases through social media and/or art.

Subject of the Challenge Competition

Rare Diseases Are Not Rare! If you know 10 people, chances are you know someone with a rare disease. There are about 7,000 different rare diseases that affect an estimated 30 million people in the United States. This is more than twice the number of people living with cancer, more than the number of people living with HIV and Alzheimer’s disease combined, and more than the current population of Texas.

Some difficulties with rare diseases are that they are hard to recognize, they are often hidden conditions, and most do not currently have ongoing medical research. We are asking you to help us bring attention to rare diseases so that they can gain more medical research interest, thereby improving the lives of people with rare diseases. Science, especially genetic medicine, has moved forward to the point now where treatments are possible—such as gene therapies, 3-D printing (devices, tissues and organs) and new drugs. Everyone deserves a chance at an effective medical treatment—whether for a common disease or a rare one—so let’s get the word out!

Here are a few facts to consider:

• Most rare diseases are genetic (around 80%)—they are caused by changes to a person’s DNA (mutations) usually present at birth. We all have DNA, and we all have mutations—whether they cause a disease or not just depends on where the mutations are and whether they impact our ability to function.
• Rare diseases also can be due to infections—such as Ebola or, in the United States, to malaria, Chagas’ disease or tuberculosis.
• Many types of cancer, such as leukemia, lymphoma and brain tumors, are rare diseases.
• About half of those diagnosed with rare diseases are children.
• Rare diseases can affect anyone, in any family, anywhere in the world. Sometimes they run in families, but often they occur with no family history.
• Rare diseases can affect many different organs and disease areas, such as lung diseases (e.g., cystic fibrosis), movement (e.g., muscular dystrophy), the brain (e.g., certain types of autism or cerebral palsy), the blood (e.g., sickle cell anemia) and many others.
• “Cancer” is actually a collection of hundreds of diseases, even though I t is often referred to by just one easily recognizable word.
• Many common diseases are actually collections of several different rare diseases that affect people in a similar way. For example, “breast cancer” is actually a collection of several different cancers, some of which are rare.

You can help by competing in our rare disease prize competition. Here’s what we’re asking you to do:

Find a way to communicate with others and educate people about rare diseases through social media or art. Use any communication vehicle you choose—be as creative and original as possible. Here are examples of appropriate communication vehicles:

• music video
• song (with or without sheet music)
• dramatic reading
• poem
• painting
• mime
• poster
• comic
• animation
• photo/collage
• new name for “rare diseases” as a whole
• puppets

Each team or individual may submit only one entry.

Rules for Participating in the Challenge

Solvers must be 18 years of age or older and may participate singly or as part of one or more teams. Teams are not limited in the number of members. Each team must designate a captain who must be a U.S. citizen or permanent resident and is responsible for all correspondence regarding this Challenge. Teams may also merge, collaborate, subdivide or otherwise organize themselves and their members as needed to prepare a solution for this Challenge.

1. To be eligible to win a prize under this Challenge, an individual or entity—
   • Shall have complied with all the requirements set forth in this Notice;
   • In the case of a private entity, shall be incorporated in and maintain a primary place of business in the United States, and in the case of an individual, whether participating singly or in a group, shall be a citizen or permanent resident of the United States. However, non-U.S. citizens and non-permanent residents can participate as a member of a team that otherwise satisfies the eligibility criteria. Non-U.S. citizens and non-permanent residents are not eligible to win a monetary prize (in whole or in part). Their participation as part of a winning team, if applicable, may be recognized when the results are announced.
   • May not be a Federal entity or Federal employee acting within the scope of their employment;
   • May not be an employee of HHS (or any component of HHS) acting in their personal capacity;
   • Who is employed by a Federal agency or entity other than HHS (or any component of HHS), should consult with an agency Ethics Official to determine whether the Federal ethics rules will limit or prohibit the acceptance of a prize under this Challenge;
   • May not be a judge of the Challenge, or any other party involved with the design, production, execution, or distribution of the Challenge or the immediate family of such a party (i.e., spouse, parent, step-parent, child, or step-child).
2. Federal grantees may not use Federal funds to develop their Submissions.
3. Federal contractors may not use Federal funds from a contract to develop their Submissions or to fund efforts in support of their Submission.
4. Submissions must not infringe upon any copyright or any other rights of any third party.
5. By participating in this Challenge, each individual (whether competing singly or in a group) and entity agrees to assume any and all risks and waive claims against the Federal government and its related entities (as defined in the COMPETES Act), except in the case of willful misconduct, for any injury, death, damage, or loss of property, revenue, or profits, whether direct, indirect, or consequential, arising from participation in this Challenge, whether the injury, death, damage, or loss arises through negligence or otherwise.
6. Based on the subject matter of the Challenge, the type of work that it will possibly require, as well as an analysis of the likelihood of any claims for death, bodily injury, property damage, or loss potentially resulting from Challenge participation, no individual (whether competing singly or in a group) or entity participating in the Challenge is required to obtain liability insurance or demonstrate financial responsibility in order to participate in this Challenge.
7. By participating in this Challenge, each individual (whether competing singly or in a group) and entity agrees to indemnify the Federal government against thirdparty claims for damages arising from or related to Challenge activities.
8. An individual or entity shall not be deemed ineligible because the individual or entity used Federal facilities or consulted with Federal employees during the Challenge if the facilities and employees are made available to all individuals and entities participating in the Challenge on an equitable basis.
9. By participating in this Challenge, each individual (whether participating singly or in a group) and each entity grants to the NIH an irrevocable, paid-up, royalty-free nonexclusive worldwide license to reproduce, publish, post, link to, share, and display publicly the Submission on the web or elsewhere. Each participant will retain all other intellectual property rights in their Submissions, as applicable.
10. NIH reserves the right, in its sole discretion, to (a) cancel, suspend, or modify the Challenge, and/or (b) not award any prizes if no entries are deemed worthy.
11. Each individual (whether participating singly or in a group) or entity agrees to follow all applicable federal, state, and local laws, regulations, and policies.
12. By participating in this Challenge, each individual (whether participating singly or in a group) warrants that he or she is the sole author or owner of, or has the right to use, any copyrightable works that the Submission comprises, that the works are wholly original with the Solver (or is an improved version of an existing work that the Solver has sufficient rights to use and improve), and that the Submission does not infringe any copyright or any other rights of any third party of which Solver is aware. To receive an award, Solvers will not be required to transfer their intellectual property rights to NIH, but Solvers must grant to the federal government a nonexclusive license to practice their solutions and use the materials that describe them. This license must grant to the United States government a nonexclusive, nontransferable, irrevocable, paid-up, royalty-free license to practice or have practiced for or on behalf of the United States throughout the world any invention made by the Solvers that covers the Submission. In addition, the license must grant to the federal government and others acting on its behalf, a fully paid, nonexclusive, irrevocable, worldwide license in any copyrightable works that the Submission comprises, including the right to reproduce, prepare derivative works, distribute copies to the public, and perform publicly and display publicly said copyrightable works. To participate in the Challenge, each Solver must warrant that there are no legal obstacles to providing the above-referenced nonexclusive licenses of Solver’s rights to the federal government.
13. Each individual (whether participating singly or in a group) and entity participating in this Challenge must comply with all terms and conditions of these rules, and participation in this Challenge constitutes each such participant’s full and unconditional agreement to abide by these rules. Winning is contingent upon fulfilling all requirements herein.
14. By participating in this Challenge, each individual (whether participating singly or in a group) agrees to allow NIH to publicly display (e.g., on websites) solutions.

The Prize

The total prize purse is up to $5,000, awarded as follows:

• First place: $3,000
• Second place: $1,500
• Third place: $500
• Honorable mentions (5) will be posted on NCATS’ website.

NIH reserves the right to cancel, suspend and/or modify this Challenge at any time through amendment to this notice. In addition, NIH reserves the right to not award any prizes if no entries are deemed worthy. The Award Approving Official will be Christopher P. Austin, M.D., NCATS director.

Payment of the Prize. Prizes awarded under this competition will be paid by electronic funds transfer and may be subject to Federal income taxes. HHS/NIH will comply with the Internal Revenue Service withholding and reporting requirements, where applicable.

Evaluation and Winner Selection

Basis upon Which Winner Will Be Selected. A panel of federal and non-federal judges, with expertise directly relevant to this Challenge, will evaluate the entries based on the criteria listed below and will select the Challenge winners.

The percentages assigned to each set of evaluation criteria are guidelines from NCATS to suggest which features are of emphasis and interest to the Center.

Only complete submissions will be reviewed.

Submission Requirements and Instructions

Instructions for submission: Please format submissions using the application instructions and submit by email to RDChallenge@nih.gov by the submission deadline. Use any format you choose from those listed in the application instructions, provided it supports the type of submission—be as creative and original as possible.

Each submission for this Challenge requires a complete “Submission Package.” The Submission Package includes a Cover Letter, the Communication Vehicle and, when appropriate, participant consent forms. Appropriate types of submissions (communication vehicles) include, but are not limited to, songs, music videos, poems, paintings, dramatic readings, mimes, puppets, posters, comics, animations, photos/collages or names for “rare diseases” as a whole.

Detailed instructions on submission requirements and process can be found here.

Cover Letter (1 page)

1. Describe how your submission provides a solution to the Challenge; that is, how does your entry address the problem?
2. Explain why you selected the type of communication vehicle.
3. Describe the target audience and propose a dissemination plan for the entry to reach as many people as possible.
4. Describe whether any collaborations contributed to producing the final entry and the uniqueness of those collaborations (for example, a patient-researcher team, siblings from different diseases, a rare-common disease team, and others).

Communication Vehicle

Follow the instructions in the Detailed Application Instructions to submit the material. Care should be given to select and upload the appropriate file types and formats. Videos are limited to two minutes’ duration.

Note: You must not use the logo or official seal of HHS nor the logo of NIH or NCATS in the entries, and entries must not claim federal government endorsement.

Evaluation Criteria

Basis upon Which Submissions Will Be Evaluated. Entries will receive up to 5 points for each of the three criteria below, for a total of up to 15 points per entry. Up to 2 bonus points may be awarded for submissions that are a product of unique collaborations, such as a patient-researcher team, siblings from different diseases, rare-common disease team and others.

1. How creative and original is the entry?
2. To what extent does the entry address rare diseases collectively? Entries focused on a single disease or specific group of rare diseases will be considered nonresponsive and will not be judged.
3. How likely is it that the entry could be an effective communication vehicle that appeals to a broad audience and is easy to disseminate?