BPAN

The Associazione Italiana Sindromi Neurodegenerative da Accumulo di Ferro (AISNAF) is the only Italian non-profit lay organization dedicated to the fight against neurodegeneration with brain iron accumulation (NBIA) in Italy. Born from the will of the parents in 2006, it has ever since raised public awareness of NBIA and acted as a catalyst to prompt the attention and interest of the scientific community towards the NBIA disorders. The AISNAF is a founding member of the International NBIA Alliance that gathers together 9 patient organizations.

The AISNAF is currently accepting applications for one-year research grants that will pave the way to new potential treatments for NBIA diseases. Funds were made available through contributions from AISNAF, Hoffnungsbaum e.V. (HoBa, Germany) and NBIA Disorders Association (NBIADA, USA). While AISNAF is the grant manager, all three funding organizations have equal responsibilities and rights, which includes nominating representatives to participate on the Scientific Advisory Board and Lay Review Board for each grant call.

Specifically, this is a three-track granting cycle that solicits proposals on the following diseases belonging to the NBIA current classification:

1) Pantothenate Kinase-Associated Neurodegeneration (PKAN)

2) Beta-propeller Protein-Associated Neurodegeneration (BPAN)

3) Mitochondrial-membrane Protein-Associated Neurodegeneration (MPAN)

Funds are available to support a one-year research project for up to € 40,000 per disease. Please, note that the three groups of proposals will be evaluated separately from each other and will access restricted funds. In each category, the research grant will be awarded only if proposals fall above the funding threshold established by the Scientific Advisory Board. We may elect not to make an award if no proposals meet this standard.

Deadlines and budget

Budget may be up to € 40,000 for a one-year project, including indirect costs, if applicable. Indirect costs are allowed up to a maximum of 10%.

Relevance

This Call solicits basic, translational and/or clinical research proposals that explore novel research ideas on the mechanisms of PKAN, BPAN or MPAN, and that will pave the way to potential new treatments. This call is for innovative explorative projects that are not currently funded by other agencies. It is expected that the results originating from this type of research will lay the basis of future proposals to larger funding agencies.

Proposals must clearly describe the added value and the impact on disease understanding or on development of treatments for PKAN, BPAN or MPAN, and have clear aims achievable within one year. A well-defined and feasible project timeline must be presented, including milestones and contingency plans. A strategy to secure subsequent funding must also be presented.

Studies such as those on the natural history of disease that require access to relevant, well-characterized patient populations or suitable biomaterial collections must participate in entering data in the International NBIA Patient Registry and collaborate with the Biobank where applicable. A statement agreeing to this requirement must be included in the application.

Evaluation

Proposals will be evaluated by an ad hoc Scientific Advisory Board (SAB) made up of independent experts. In addition to AISNAF SAB, reviewers were also selected to participate by HoBa and NBIADA, as funding partners in this joint call (see here for details). All possible conflicts of interest will be carefully evaluated beforehand. Criteria for evaluation are: scientific quality, appropriateness of approaches, logic of experimental plan and methods, likelihood of success, long-term sustainability of the research program and potential to generate significant impact on the life of PKAN, BPAN or MPAN individuals.

Each proposal will receive a score and the proposals falling above the funding threshold (i.e. fundable projects) will be evaluated by the Lay Review Board (LRB) that comprises NBIA family members recommended by each of the funding partners. The LRB will choose those that best suit the scope of the Call and the vision of the families from the fundable proposals for each of the three diseases.

All applicants will receive written feedback at the end of the evaluation process.

Reviewers will be bound to strict confidentiality about the matters that come to their knowledge during the review process.

Eligibility

To be eligible for this award, applicants must be:

• Scientifically independent (early career investigators, i.e. senior post-doctoral fellows, research associates and assistant professors, are eligible for this Call provided that their salary is covered by the Host Institution throughout the funding period – Host Institutions must sign a formal declaration);
• Affiliated with a public or private non-profit research institution.

Host Institution Agreement

Applicant’s Host Institution (HI) is required to sign a letter of agreement that must be printed on paper bearing the official letterhead of the HI itself and sent as pdf together with the application.

A template of the HI Agreement can be found here.

International applicants are welcome

All documents must be submitted in English. The research can be conducted in the United States, countries of the European Union, Canada, Australia, New Zealand, Brazil, Argentina, Chile, South Africa, Japan, or Israel, and in other countries where adequate supervision of grant administration is possible.

The awardees will be required to provide an interim scientific report (after six months from project start date) and a final report at the end of the funding period, including financial details to substantiate the use of the awarded funds. It is anticipated that AISNAF and/or the partners (i.e. NBIADA and HoBa) might invite the awardees to present their findings at their family conference meetings.

Grant agreement

Awardees and their Institutions will be asked to sign a Grant Agreement with a project start date of no later than January 31, 2019.

Further Information

• If study involves humans, copies of the Informed Consent will be required, and if study involves humans or animals the Institutional Review Board (Ethics Committee) approvals will be required from each site involved in the study before payment.
• Clinical drug trials must meet the requirements established by the European Medicine Agency (EMA) and/or the Food and Drug Administration (FDA).
• All publications resulting from the research funded must acknowledge AISNAF, HoBa and NBIADA and should be provided to AISNAF when published for dissemination.
• Grant recipients will receive 1 year funding in three stages: 1/3 at start of project; 1/3 at six months after interim scientific and financial reports are submitted and approved; and the final 1/3 payment at the conclusion of the grant after final scientific and financial reports are submitted and approved. The PI must submit a final scientific & financial report within three months of the end of the Grant Period unless an extension is granted. Grant recipients not in compliance with this requirement may forfeit their final payment.
• AISNAF must be informed immediately of any change to the status of the PI or other important contributors to the project which might affect their ability to comply with grant conditions.
• If the interim or final reports reflect serious deviations from the grant objectives and cannot be explained adequately, forfeiture of funds due or termination of the grant award may be warranted.
• All research papers that have been accepted for publication in a peer-reviewed journal, and are supported in whole or in part by the Grant, must be made available at NIH PubMed Central as soon as possible, and in any event within six months of publication, in line with an Open Access policy.
• It is recommended that research resources, including model organisms, developed under this funding initiative must be shared. Please include a sharing plan in your proposal.

APPLICATION GUIDELINES

Read and follow the instructions carefully

Use English language only.

Formatting guidelines

Font: Times New Roman

Type font: 12 point

Spacing: Single-spaced between lines of text and double-spaced between paragraphs (please, do not exceed the character number limitations specified which include spaces).

Please carefully follow these guidelines to assemble your proposal and send it by email as an attached pdf.

Figures

Applicants are requested to limit the number of figures used and to not copy sections of already published papers.

Figures can be uploaded in the following sections: Preliminary Results and Research Plan. Graphs or charts can be placed here as well. Use high resolution pictures only for photographs that require details.

Proposal

Proposal must contain all the following sections and be sent as one pdf file:

1. Cover Letter (please use the form downloadable here)
2. Principal Investigator (please use the form downloadable here for biosketch and bibliography)

Please note that the project may have only one PI. Multi-centre projects with more than one lab involved requesting financial support are not eligible for this funding initiative.

3. Scientific information:

4. Consent to the processing of personal data. Please download the form here, print, sign and send it together with your application.

Please note that failure to submit all requested information

will result in exclusion from further review.

Document must be a single pdf with file name “2018 AISNAF Grant Application-your last name/DISORDER,” and emailed to info@aisnaf.org no later than September 15, 2018.