Dana’s Angels Research Trust (DART) and its collaborators in the Support Of Accelerated Research for NPC collaborative (SOAR-NPC) are leaders in setting the agenda for Niemann-Pick type C disease (NPC) research worldwide, and represent some of the largest charitable funders of and advocates for NPC research. The mission of DART and SOAR-NPC is to find treatments and a cure for NPC and its complications through the support of research.
I. Policy Requirements
Human Subjects & Animal Welfare: DART follows U.S. National Institutes of Health (NIH) Guidelines for the humane care and use of animals in research and for the use of human subjects in research. Grantees are expected to comply with all local government regulations regarding the participation of human subjects and the use of animals in research.
Confidentiality: Most grant materials submitted to DART, including quarterly, milestone and annual progress reports, are for internal DART and SOAR-NPC use only. Exceptions include the lay abstract and the annual web progress reports. These will be shared with the public and grantees should not include any data that is not meant for public disclosure in these materials.
Conflict of Interest: Grantees’ organizations/institutions are expected to have established policies about, and safeguards against, conflict of interest. Grantees’ organizations/institutions should have protection in place that prevent grantees and their employees or consultants/subcontractors from using their positions for personal gain (for themselves, or for other individuals, friends, business associates, family members, or others), financially or via gifts, favors, or other similar actions.
II. General Cost Principles
Budget Guidelines: Expenses within each grant year’s budget and within the expenditure report should reflect the DART/SOAR-NPC approved budget for the grant budget period. A grant’s expenses must be allowable, allocable and reasonable as per the cost principles appropriate for the institution/organization as set forth in a grant agreement or grant letter before grant activation.
Indirect Costs Guidelines: Indirect costs are limited to 10% of direct costs. Equipment, subcontract, contractual, and fee-for service costs are not considered direct costs. In instances where there is a subcontract, the contracting institution may take up to 10% indirect costs on the direct costs to be incurred at the institution. The grantee institution may not incur any indirect costs off the subcontract costs. Grantees may charge indirect costs to less than 10%, but may not exceed 10%. Indirect costs are not allowable for postdoctoral fellowship awards or for honorarium-like gifts or grants.
Change in Research Plan: Any revision to the approved research plan must be approved by DART personnel responsible for the oversight of the grant award.
Unexpended Balances: For 1-year grants, unspent balances must be returned at the end of the 12-month award period. For 2-year grants, up to 20% of the year 1 funds may be carried to year 2 with no additional approval required. At the end of the Grant Period, unspent balances must be returned. The Principal Investigator may petition the DART for a no-cost extension within thirty (30) days of the end of the Grant Period. The petition must be submitted in writing (mail or email) no later than two months before the end of the Grant Period.
Record Retention: As per Generally Accepted Accounting Principles (GAAP), grantees are expected to retain both financial and programmatic records (either electronic or paper) relating to any DART/SOAR-NPC grant for a period of at least 7 years.
Auditing: DART reserves the right to audit all expenses related to DART/SOAR-NPC awards at any time. As a condition of accepting awards, grantees’ organizations/institutions agree to maintain books and records documenting the expenditure of DART/SOAR-NPC grant funds in accordance with customary accounting procedures. Grantees’ organizations/institutions further agree to make these books and records available to DART/SOAR-NPC for review (at DART/SOAR-NPC’s expense) upon request.
III. Publication Requirements
Grantees are expected to publish in relevant scientific journals and to provide information to the public on objectives, methodology, and findings resulting from their DART/SOAR-NPC supported research activities. Grantees must notify DART of any publication relating to DART/SOAR-NPC supported research. Copies of abstracts and journal articles (preprints and reprints) should be included as a component of the grantee’s yearly grant renewal, or may be submitted anytime during the grant year.
IV. Intellectual Property, Invention Reporting, & Royalties
The mission of DART and SOAR-NPC is to find a cure for NPC and its complications through the support of research. In furtherance of this mission, DART and SOAR-NPC provides funding to various research institutions to conduct research in connection with the treatment, and cure of NPC and its complications. All research grants from/for DART/SOAR-NPC require the execution of and Intellectual Property Rights Agreement covering intellectual property discovered, its protection, commercialization and royalties