For Researchers

Our floxed CDKL5 mice for conditional knockout studies are now available with open access from the Jackson laboratory.

We are happy to share the latest update and report on the Phenotyping of CDKL5 Mice


Research Awards
All Awards funded by the International Foundation for CDKL5 Research (IFCR) are subject to the terms and conditions outlined in this Policy Statement. Deviations from the policies outlined in this document are valid only if made in writing and signed by a member of the Executive Committee of the Board of Directors of IFCR. All research undertaken with IFCR funding is the sole responsibility of the Principal Investigator of that grant. The Principal Investigator and Sponsoring Institution are both responsible for insuring that all research activities are conducted in a safe, responsible and ethical manner.

Grant Period and Payments
Investigators may request support for multiple years, but Awards made by IFCR are usually funded one year at a time. The Principal Investigator acknowledges that subsequent years of funding are contingent on submission of a non-competitive progress report, the achievement of agreed upon milestones, as well as the availability of funding by IFCR. Grant payment terms are outlined in the funding approval letter under payment schedule.

Research Proposal and Indirect Costs
The Principal Investigator shall commence the research described in the Research Proposal on or about the time that the first grant payment is received by the Sponsoring Institution. If the Principal Investigator is unable to commence the project at that time, the Board of Directors of IFCR should be promptly notified. Funds provided by this grant are for the purposes of conducting the research described in the Research Proposal and may not be used for any other purpose without the express written consent of IFCR’s Board of Directors. The International Foundation for CDKL5 Research will not pay indirect or institutional costs, nor will it fund graduate student remission fees. Allowable expenses by category shall be as specified in the letter accompanying this statement of Terms and Conditions. Funds that are unexpended or uncommitted at the termination of the grant shall be remitted to IFCR within sixty days.

Progress and Financial Reports
Award recipients must provide IFCR with a brief narrative progress report due <insert terms> following commencement of the award. Second year funding of two-year awards is contingent upon the timely submission of a non-competitive scientific year-end progress report satisfactory to IFCR. This report is due no later than 12 months after the commencement of the award and shall delineate the objectives and accomplishments of the project to date. The progress report shall also highlight unanticipated problems or substantial deviations from the research timetable outlined in the original Research Proposal. An interim financial report should accompany the year-end progress report.

The Principal Investigator shall be responsible for submitting a Final Progress Report to IFCR no later than sixty days after the termination of the grant. The Final Progress Report should delineate (a) the objectives and significant findings of the research, (b) future directions suggested by the research, (c) if a proposal based on the IFCR-funded research is being submitted to the NIH or other entity for additional funding, and (d) a listing of publications in preparation, submitted or in press stemming from the research. A Final Report of Expenditures signed by the responsible administrative official at the Sponsoring Institution should accompany the Final Progress Report along with a refund of any unexpended balance of awarded IFCR funds.

The Principle Investigator should be aware that IFCR may use all or portions of the Final Progress Report for publicity purposes such as in its newsletter, on its website, or in other publications.

Publication Policy
It is expected that the results of research supported by IFCR will be published as soon as practical in the open literature, consistent with high standards of scientific excellence and rigor. The responsibility for publication lies exclusively with the Principal Investigator and results of any work supported through IFCR may be published without prior review by IFCR.

Any publication arising in whole or in part from an Award funded by IFCR shall acknowledge funding support by the International Foundation for CDKL5 Research. When a manuscript is accepted for publication (whether during the term of the Award or after it has expired) a copy of the publication along with the name of the journal and expected date of publication should be promptly forwarded to IFCR. When reprints are available, two copies of the reprint should be promptly mailed to IFCR.

Sharing Policy
IFCR-funded investigators may be asked to make reagents (eg. animal models, expression plasmids, antibodies, permanent cell lines) and detailed protocols for their use available, upon request, to qualified scientists for non-commercial purposes. Protocols may also be included on the IFCR website. Recipients will be expected to bear shipping costs and acknowledge the source of the reagents in resulting publications.

Patent Policy
Discoveries and related regulatory approvals made under IFCR’s sponsorship are the property of the Sponsoring Institution or Principal Investigator conducting the research; provided, however, that IFCR shall have the right of royalty-free use for noncommercial purposes of such discoveries. The Sponsoring Institution and Principal Investigator are responsible for insuring that prompt public disclosure of all commercially usable information is made as soon as practical. The Principal Investigator and Sponsoring Institution are also responsible for notifying IFCR of the filing of any letters of patent for any discovery made on research funded by IFCR. Furthermore, if such patents (or exclusive rights to a discovery) have been obtained and are being sold or transferred, IFCR has the first right of refusal to acquire the patent or exclusive rights.

Termination of the Award
This Award may be terminated or cancelled by IFCR upon 30 days written notice to the Principal Investigator and Responsible Administrative Official at the Sponsoring Institution if, in the sole discretion of IFCR, (a) the Principal Investigator is unable to carry out, in a timely manner, the research for any reason, (b) the Principal Investigator or any member of his/her research team is found by an institutional investigation to have committed scientific misconduct or fraud, (c) the Principal Investigator has failed to comply with the material terms and conditions of this Award or (d) IFCR concludes that the Principal Investigator has received overlap funding for the Award or that the funds are not being used for the purposes originally outlined in the Research Proposal. In the event of cancellation or termination, all unexpended funds as of the termination/cancellation date must be returned to IFCR within 60 days of such written notice.

The Principal Investigator and Sponsoring Institution are responsible for notifying IFCR promptly and in writing of any institutional investigation into the conduct of the Principal Investigator or any member of his/her research team and for keeping IFCR informed on a timely basis of the progress and outcome of the investigation.

Transfer or Retirement of the Principal Investigator
If prior to the termination of the grant, the Principal Investigator’s employment, affiliation or other relationship with the Sponsoring Institution is terminated for any reason, the grant will be terminated, and all unexpended or uncommitted funds shall be returned to IFCR within 60 days. Awards may not be transferred to another individual working at the Sponsoring Institution nor transferred to any other institution without the prior written consent of IFCR’s Board of Directors.

Ownership of Equipment
Title to all equipment purchased with IFCR funds shall vest in IFCR for the duration of the Award and for a period not to exceed sixty days from the termination date of the Award. During this time, IFCR may, at its option, direct the transfer of title to the equipment to the Sponsoring Institution, Principal Investigator or to a third party. After such time, title to the equipment shall revert to the Sponsoring Institution.

The Sponsoring Institution shall be responsible for its own acts or omissions or those of its officers or employees while performing their professional duties as set forth in this Agreement, to the full extent allowed by law. Without limitation, Sponsoring Institution acknowledges that the IFCR is a passive awarder and has no responsibility for patient care or costs, other than those approved expenses delineated in the award.

Human Subjects
For research involving human subjects, the Sponsoring Institution shall ensure that the research proposal is reviewed and approved in writing by an Institutional Review Board constituted in accordance with current regulations promulgated by the United States Department of Health and Human Services and approved by the Department. Legally acceptable consent must be secured for all human subjects taking part in any research funded in whole or in part by IFCR. IRB approval forms from an Institutional Review Board must be submitted for the life of the grant.

Use of Experimental Animals
For research involving animals, the Sponsoring Institution shall ensure compliance with applicable chapters of the Public Health Service Animal Welfare Policy, the NIH Manual for Grants and Contracts, and any and all requirements of the Sponsoring Institution concerning animal welfare. Approval forms from the Sponsoring Institution’s Animal Welfare Committee must be submitted for the life of the grant.

Overlap Funding
The Principal Investigator and the Sponsoring Institution are responsible for ensuring that the research described in the Research Proposal is not sponsored or funded by any other entity or organization. If support for the project is obtained elsewhere, the Principal Investigator agrees to notify IFCR promptly. Any funds awarded by IFCR may be withdrawn should funding be received for the same purposes from other sources.

Laboratory/Clinic Visits
As a condition of support, the Principal Investigator agrees that a representative of IFCR may visit the laboratory or clinic or institution where the grant is being funded upon reasonable prior notification and during normal business hours.

Any notices or other communications among IFCR, the Principal Investigator and the Sponsoring Institution shall be sent by US Mail, certified mail, return receipt requested, or by overnight courier, and addressed to IFCR, P.O Box 926, Wadsworth, OH 44282 and to the Principal Investigator and the Sponsoring Institution at such address as appeared on the Research Proposal submitted to IFCR or to such other address as shall have been specified in writing to the other parties and delivered in accordance with this section.

International Foundation for CDKL5 Research
PO Box 926
Wadsworth, OH 44282