Foundation for Ichthyosis & Related Skin Types, Inc Research Grant Application Packet

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Contents: Research Priorities Guidelines for Submission of Proposals Proposal Application Forms (see list of forms in Table of Contents, page 2) Terms and Conditions of Awards Schedule for Applications: Letter of Intent deadline for FY 2016 is February 19, 2016. The application deadline for FY 2016 is March 31, 2016. 2016 award announcements will be made on June 30, 2016. Funds available September 1, 2016. Please download the application packet in Word or PDF format. Complete the application and return to the Foundation for Ichthyosis & Related Skin Types (FIRST) by email to mwenik@firstskinfoundation.org. Please include any relevant attachments. Electronic submissions are preferred. Moureen Wenik, Senior Director, Programs & Research 2616 N. Broad Street Colmar, PA 18915 For more information: Telephone: 215.997.9400 Fax: 215.997.9403 Email: mwenik@firstskinfoundation.org 1

Table of Contents I. Introduction......3 II. Research Grant Program and Priorities..3 III. Guidelines for Submission of Proposals. 4 IV. Use of Animals in FIRST-Funded Biomedical Research 6 V. Proposal Applications Forms a. Project Application.... 7 b. Project Abstract. 8 c. Project Budget.... 9 d. Biographical Sketch.... 10 e. Research Plan.. 11 f. Resources /Facilities Description..... 12 VI. Terms and Conditions of Awards...13 VII. Application Checklist....14 2

Introduction The Foundation for Ichthyosis & Related Skin Types (FIRST) research grant program was established in 2006 to encourage and support investigation into the causes, treatments, and potential cures for ichthyosis. Surveys of the ichthyosis community, specifically individuals affected with ichthyosis and their families, have indicated that research is their primary area of interest and their top priority for funds donated to FIRST. In response to this, FIRST initiated an expanded program to promote promising avenues of research by investigators who have a new or established interest in the ichthyoses. The genetic basis of most types of ichthyosis is now known. Recent advances in knowledge about epidermal structure, function, and physiology have provided insights into the pathogenesis of several of the ichthyoses. A variety of new approaches to molecularly targeted therapy for genetic disease have been developed by the scientific community. FIRST and its stakeholders are determined to promote the use of this knowledge and to encourage its translation into more effective therapies. Research Priorities FIRST is particularly interested in supporting new initiatives that will lead to ongoing, self-supporting programs in ichthyosis research. It will also support shorter studies that will provide definitive information within 1 to 2 years. Grants may be funded up to $50,000 and may be renewed for a total of two years, depending on progress and availability of funds. Research priorities are set jointly and reviewed annually by FIRST s Medical and Scientific Advisory Board. About FIRST FIRST is a vibrant, growing foundation connected to its members and families by the special skin and unique management needs of individuals and families with ichthyosis and related skin types. Our mission is to improve lives and seek cures for those affected by ichthyosis and related skin types. 3

Guidelines for Submission of Proposals 1. A letter of intent containing an abstract of the proposal must be received by February 19, 2016. After review of the LOI, the Foundation will invite applicant to submit full application. 2. Grant proposals must be received in the Foundation office by March 31, 2016. 3. Electronic submissions are preferred. Please use a minimum of 11 point Arial. 4. All grants are available for funding for up to a total of 2 years, pursuant to acceptable progress reports after one year and availability of funds. 5. The narrative portion of the application may not exceed 5 pages. 6. Proposals must include 1. A starting date for the project and a proposed ending date. Use the appropriate space on the form entitled Proposal Application Form. 2. A summary of the proposed project. Use the attached form - Project Abstract. Please use lay language to the extent possible. 3. A detailed budget. Use the form entitled Detailed Budget for Initial Budget Period. A budget should detail a one-year budget for up to $50,000 and a 2-year budget. 4. The budget is not to include funding for equipment greater than $2,000. 5. Payments will be made to the financial officer of the principal investigator s institution, who will be responsible for administering the funds. Any unexpended funds shall be returned to the Foundation upon completion of the funding period, unless an extension is approved by the Foundation. 6. The Foundation does not fund indirect costs. 7. Complete biographical information on the principal investigator, co-investigators, and any other significant personnel. Please use the form entitled Biographical Sketch, page 10. May not exceed four pages. a) Personal Statement - Briefly describe why your experience and qualifications make you particularly well-suited for your role (e.g., PD/PI, mentor, participating faculty) in the project that is the subject of the application. Within this section you may, if you choose, briefly describe factors such as family care responsibilities, illness, disability, and active duty military service that may have affected your scientific advancement or productivity. b) Positions and Honors - List in chronological order previous positions, concluding with the present position. List any honors. c) Selected Peer-reviewed Publications - FIRST encourages applicants to limit the list of selected peer-reviewed publications or manuscripts in press to no more than 15. 4

Do not include manuscripts submitted or in preparation. The individual may choose to include selected publications based on recency, importance to the field, and/or relevance to the proposed research. When citing articles, provide the PubMed Central (PMC) reference number (e.g., PMCID234567) d) Research Support List both selected ongoing and completed research projects for the past three years (Federal or non-federally-supported). Begin with the projects that are most relevant to the research proposed in the application. Briefly indicate the overall goals of the projects and responsibilities of the key person identified on the Biographical Sketch. Do not include number of person months or direct costs. 8. A detailed description of your research plan including hypothesis or hypotheses, proposed methodologies, expected results, and strengths and potential pitfalls of the project. Please consult page 11 for a suggested format. 9. A description of the facilities available, including a Letter of Commitment to collaborate from your institution or department head. 10. Letters of Commitment to collaborate from other research institutions or facilities that will participate in the project. 11. An explanation of how the project could be sustained, if appropriate, after the period for which support has been requested. Use of Human Data/Biological Specimens Research that involves the use of human data or biological specimens is considered human subjects research and must be approved by the Human Subjects Review Board of the applicant s parent institution Use of Animals in FIRST-Funded Biomedical Research Animals shall be used in biomedical research only when no other means of obtaining scientifically sound, valid and useful results are available. The minimum number of appropriate animals required to obtain and validate results shall be used. The acquisition, care and use of animals must be in accordance with all applicable federal, state and local laws and regulations and must be approved by the institutional animal care and use committee. Certifications must be received from research facilities prior to being approved for a research grant that the facility(ies), its researchers and employees adhere to the Animal Welfare Act, National Research Council Guide for the Care and Use of Laboratory Animals, and any appropriate U.S. Department of Agriculture or National Institutes of Health regulations and standards. In cases requiring the death of an animal, only the most appropriate and humane form of euthanasia shall be used consistent with the purpose of the research. 5

Project Application Investigator: Project Title: Date of Application: Principal Investigator: Degree: Position: Address: Phone Number: Fax: Email: Sponsoring Institution / Department Grants Contract Administrator, Name: Address: Phone: Fax: Endorsing Chairman of the Department: Chairman s Phone Number: Total Funds Requested: Signature: Dates of Proposed Project Period: Site of Project: Principal Investigator Signature: Animal use Human subject use Please send a hard copy of the Project Application with accompanying signature to the Foundation. 6

Project Abstract Investigator: Project Title: Abstract: Please do not exceed this page length. Use lay language to the extent possible. Objective: Methods: Relevance to the mission of the Foundation for Ichthyosis & Related Skin Types: 7

Project Budget List Direct Costs Only Investigator: Project Title: Detailed Project Budget From: Through: Type of Grant: Personnel (Applicant organization only): Dollar amount requested: Name Title/Position Principal Investigator % Effort Salary Fringe Benefits Totals Subtotals: Supplies (please itemize): Other: Total Request: $ 8

Biographical Sketch Please provide the following information for the key personnel and other significant contributors in alphabetical order following the principal investigator. Follow this format for each person. Do not exceed 4 pages. Investigator: Project Title: Name Position / Title Education/Training (Begin with baccalaureate or other initial professional education, such as nursing, and include postdoctoral training). Institution and Location Degree Month/Year(s) Field of Study Please refer to the Guidelines for Submission of Proposals in order to complete sections 7 a-b-c-d, of the Biographical Sketch. 9

Research Plan Suggested Format: Project Title: Principal Investigator: I. Hypothesis: II. Goals and Objectives: III. Significance: How is this project relevant to advancing an understanding of or treatment for ichthyosis? IV. Background / Preliminary Data V. Experimental Design/Methods: VI. Potential Pitfalls/Alternatives: VII. References: Please do not exceed 5 pages, exclusive of references.. 10

Resources/Facilities Description Specify the facilities to be used for the proposed project. Indicate the performance sites, capacities, pertinent capabilities, and relative proximity to and availability to the project. Under Other, identify relevant support services and indicate the extent to which they will be available to the project. Resources Laboratory: Clinical: Animal: Computer: Office: Other: Major Equipment List the most important equipment items readily available for this project, noting the relevant capabilities and location of each: 11

Terms and Conditions of Awards 1. Duration: Grants are funded for up to a total of 2 years, pursuant to acceptable progress reports after year one and availability of funds. Funding begins September 1, 2016. 2. Changes of Status of Principal Investigator: If the named principal investigator changes affiliations, the award will follow only after approval of the transfer from the Foundation. If the named principal investigator ceases work on the project for which the award was made, the award will terminate and the remaining balance will be returned to the Foundation. 3. Site of Project: Awards are for study at public or private universities, colleges, hospitals, and biomedical research institutions. The principal investigator will make all arrangements for the conduct of the proposed project. 4. Publications: All discoveries resulting from work supported by the Foundation for Ichthyosis and Related Skin Types should be made available to the public and the scientific community through peer reviewed publications and national meetings. Publications and presentations must acknowledge the support of the Foundation. One reprint of each publication must be forwarded to the Foundation. 5. Publicity: The Foundation for Ichthyosis & Related Skin Types shall be permitted to use the principal investigator s name, image and likeness, as well as the name of the affiliated institution, in connection with all statements, printed materials, or electronic media related to the grant award or related to the Foundation s research program. The principal investigator will provide appropriate photographs and biographical information at the Foundation s request. 6. Realistic Goals: Prior to making awards, applicant will be asked to provide a timetable with realistic goals for every 6 months of support. Such information will form the basis of progress reports, which will be important in determining future years of support. 7. Progress and Financial Reports: All grantees will be required to submit a brief technical progress report and a financial report at 6 months and 12 months after the start of the project, and final report 30 days after the end of the granting period. 8. The Foundation expects that all investigators supported by the Research Grant Program will cooperate to the maximum feasible extent with other scientists who are studying ichthyosis, including sharing notice of any patent applications related to Foundation-funded research. 12

Application Checklist Project Application Project Abstract Project Budget Biographical Sketches Other Support Research Plan Facilities Description Letters of Commitment Institutional certification of adherence to standards for use of animals or humans in biomedical research 13