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Call for Innovative Research Projects in Advanced Therapies for Dravet Syndrome

1. Introduction

Dravet Syndrome Foundation Spain (FSD) was created with the primary goal of removing the barriers that prevent research on Dravet syndrome from advancing, as well as encouraging the search for effective treatments that can mitigate or even cure the disease.

In this context, there is currently a need to support innovative research projects aimed at finding new treatments and improving the quality of life for those living with Dravet syndrome.

Therefore, FSD places a high priority on funding research that has a clear path to genetic understanding, clinical application and/or therapeutic development.

2. Call timeline

The FSD Scientific Committee will oversee the research grant program and provide funding recommendations to FSD Board of Trustees.

Deadlines of this call (hours in CET):

– Research Grant Announcement: November 3, 2020

– Deadline for receipt of letters of intent: Midnight December 6, 2020

– Invitation to apply: December 28, 2020

– Deadline for receipt of applications: Midnight March 7, 2021

– Announcement of the awarded Project(s): April 12, 2021

– Maximum project start date: before September 1, 2021

– Maximum project completion date: before August 31, 2023

FSD will grant up to a maximum of 120’000 euros in total, which will be applied to finance one or more projects with a maximum duration of 2 years.

Being a non-profit organization that depends on donations and fundraising from families, FSD is not able to cover overheads and any indirect cost of the project such as rents for labs, offices and facilities, library services or general administration. On the contrary, direct costs such as salaries directly attributed to the project, laboratory equipment, consumables, publications or travel expenses for project dissemination purposes can be covered by this grant.

3. Research Project

A. Significance

Top priority will be given to basic, preclinical and clinical research aimed at advanced and innovative therapies to mitigate or eliminate symptoms caused by Dravet syndrome. Eligible areas of study in this Call for Proposals include, but are not limited to, viral vector gene therapy, non-viral vector gene therapy and synthetic biology (e.g., development of small molecules which alter RNA splicing or protein conformation).

Specifically, this Call for Proposals focuses on innovative exploratory projects that are not currently funded by other entities due to their preliminary nature or because they study aspects of the disease not yet covered by other researchers. It could be that the results originating from these investigations will lay the foundation for future proposals to larger funding agencies.

However, applying the same criteria of scientific quality and innovation, this Call for Proposals may allow co-funding of projects currently funded by other agencies provided that they do not overlap with activities/objectives already covered, i.e. FSD’s funds will support essential and additional objectives.

In any case, the added value and impact on the understanding of the disease or the development of treatments for Dravet syndrome must be clearly established.

Proposals must have clear objectives that are achievable within a maximum two-year project period: a well-defined and achievable project timeline which includes milestones and contingency plans must be presented. A clear strategy should also be presented to ensure subsequent funding in case this is necessary.

In the case of projects in basic research, the application must state the viability of the project for a future transfer to the clinic.

If necessary, access to relevant and well characterized patient populations or adequate collections of biomaterials should be demonstrated.

B. Information to be included in the Letter of Intent

A Letter of Intent must be submitted to FSD. This letter will be in digital format and sent electronically through the online form available at this web page.

The letter will include the following sections, all written in English:

– Title of the project

– Details of the Principal Investigator

– Summary

– Objectives

– General Methods

– General Timeline

– General Budget

– Expected Results

– If applicable, feasibility of the project for future transfer to clinical research

– Complete contact information and contact person for all correspondence

C. Evaluation

An evaluation process, consisting of three steps, will be conducted:

First: The Letters of Intent received will be evaluated by the FSD Scientific Committee following the criteria of scientific quality, relevance and the potential to generate significant knowledge consistent with the objectives of the Call.

Ideas for projects selected in this first phase will receive a letter from FSD by which applicants will be invited to submit their full projects. Applicants will be notified of the result of this first evaluation step by email. No further written comments will be provided to applicants at this stage.

Second: The Scientific Committee will evaluate the full projects based on the following criteria: scientific quality, appropriateness and suitability of approaches, logic of the plan and experimental methods, probability of success and long-term sustainability of the research program.

Eligible projects, selected by the FSD Scientific Committee based on the criteria mentioned above, will enter the third and final evaluation step.

Third: The Scientific Committee will choose, among the fundable proposals, those that best fit the scope and objectives of the call.

All applicants will receive a written explanatory statement at the end of the evaluation process. The evaluators are subject to strict confidentiality regarding the matters of which they become aware during the review process.

D. Eligibility

To be eligible for this call, applicants must be scientifically independent and affiliated with a public or private research entity; Early career researchers, i.e., senior postdoctoral fellows, research associates, and assistant professors are eligible for this call provided that their affiliation with the host institution is assured throughout the funding period. The host entities must sign a formal statement in such case.

International applicants, whatever their ethnic origin, religion, age, gender and ability are called to apply to this program.

Collaborative projects involving more than one research group at the national or international level will be positively evaluated. Only one application per research group will be accepted. Exceptionally, in the case of collaborative projects, the same research group may submit more than one project as long as the collaborating groups are different in each project.

Entities, centres, research teams and principal investigators who have received funding, directly or indirectly, from FSD in the past must have fulfilled any and all contractual obligations to FSD, including but not limited to interim or final financial and project reports, to be eligible for this call for proposals.

FSD reserves the right to declare this call null and void if the quality of the proposals is considered insufficient or not suitable. FSD also reserves the right, at its discretion and without prior notice, to change, modify, add, or remove the portions of this call that it deems appropriate at any time.

E. Agreement of the host entity

Once the research project has been accepted, the applicant’s host entity must sign a letter of agreement that must be printed on paper and stamped with the official letterhead of the host entity. The scanned copy of this letter, in pdf format, must be sent to FSD via email to research@dravetfoundation.eu no later than fifteen (15) days after project approval.

F. Project follow-up

The successful applicants must provide an interim scientific report at a time to be defined according to the characteristics of the selected project, and a final report at the end of the funding period, both including financial details as proof of the use of the awarded funds. In addition, FSD kindly requests that award recipients diligently report any delays, changes or unexpected results. It is anticipated that FSD may invite or request award recipients to present their progress at the FSD Annual Family Meeting and/or the FSD Annual Scientific Conference.

G. Grant Agreement

Once the project is awarded, FSD will prepare a Grant Agreement. This agreement, written in Spanish or English, must be signed by the grant holders and their entities as well as by FSD, highlighting, among others, the following conditions:

– The start date of the project must not be later than September 1, 2021.

– Interim and final scientific and financial reports will be presented by the funded group to FSD. These reports will determine the continuity of funding by FSD.

– No indirect costs will be covered with this grant.

– The intellectual property and the income distribution derived from the discoveries made from the awarded project will be subject to post-award negotiations between FSD and the Entity of the awardee.

Evaluation of the call has finalised. All applicants have received the evaluation letters by an e-mail notification from the Scientific Committee of Dravet Syndrome Foundation Spain. The coordinators of successful proposals for which funding is available (see HERE) have received an e-mail notification about all actions needed to carry out their research projects.

For further details, please contact us at research@dravetfoundation.eu.

1. Introduction

Dravet Syndrome Foundation Spain (FSD) was created with the primary goal of removing the barriers that prevent research on Dravet syndrome from advancing, as well as encouraging the search for effective treatments that can mitigate or even cure the disease.

In this context, there is currently a need to support innovative research projects aimed at finding new treatments and improving the quality of life for those living with Dravet syndrome.

Therefore, FSD places a high priority on funding research that has a clear path to genetic understanding, clinical application and/or therapeutic development.

2. Call timeline

The FSD Scientific Committee will oversee the research grant program and provide funding recommendations to FSD Board of Trustees.

Deadlines of this call (hours in CET):

  • Research Grant Announcement: November 3, 2020
  • Deadline for receipt of letters of intent: Midnight December 6, 2020
  • Invitation to apply: December 28, 2020
  • Deadline for receipt of applications: Midnight March 7, 2021
  • Announcement of the awarded Project(s): April 12, 2021
  • Maximum project start date: before September 1, 2021
  • Maximum project completion date: before August 31, 2023

FSD will grant up to a maximum of 120’000 euros in total, which will be applied to finance one or more projects with a maximum duration of 2 years.

Being a non-profit organization that depends on donations and fundraising from families, FSD is not able to cover overheads and any indirect cost of the project such as rents for labs, offices and facilities, library services or general administration. On the contrary, direct costs such as salaries directly attributed to the project, laboratory equipment, consumables, publications or travel expenses for project dissemination purposes can be covered by this grant.

3. Research Project

Top priority will be given to basic, preclinical and clinical research aimed at advanced and innovative therapies to mitigate or eliminate symptoms caused by Dravet syndrome. Eligible areas of study in this Call for Proposals include, but are not limited to, viral vector gene therapy, non-viral vector gene therapy and synthetic biology (e.g., development of small molecules which alter RNA splicing or protein conformation).

Specifically, this Call for Proposals focuses on innovative exploratory projects that are not currently funded by other entities due to their preliminary nature or because they study aspects of the disease not yet covered by other researchers. It could be that the results originating from these investigations will lay the foundation for future proposals to larger funding agencies.

However, applying the same criteria of scientific quality and innovation, this Call for Proposals may allow co-funding of projects currently funded by other agencies provided that they do not overlap with activities/objectives already covered, i.e. FSD’s funds will support essential and additional objectives.

In any case, the added value and impact on the understanding of the disease or the development of treatments for Dravet syndrome must be clearly established.

Proposals must have clear objectives that are achievable within a maximum two-year project period: a well-defined and achievable project timeline which includes milestones and contingency plans must be presented. A clear strategy should also be presented to ensure subsequent funding in case this is necessary.

In the case of projects in basic research, the application must state the viability of the project for a future transfer to the clinic.

If necessary, access to relevant and well characterized patient populations or adequate collections of biomaterials should be demonstrated.

A Letter of Intent must be submitted to FSD. This letter will be in digital format and sent electronically through the online form available at this web page.

The letter will include the following sections, all written in English:

  • Title of the project
  • Details of the Principal Investigator
  • Summary
  • Objectives
  • General Methods
  • General Timeline
  • General Budget
  • Expected Results
  • If applicable, feasibility of the project for future transfer to clinical research
  • Complete contact information and contact person for all correspondence

An evaluation process, consisting of three steps, will be conducted:

First: The Letters of Intent received will be evaluated by the FSD Scientific Committee following the criteria of scientific quality, relevance and the potential to generate significant knowledge consistent with the objectives of the Call.

Ideas for projects selected in this first phase will receive a letter from FSD by which applicants will be invited to submit their full projects. Applicants will be notified of the result of this first evaluation step by email. No further written comments will be provided to applicants at this stage.

Second: The Scientific Committee will evaluate the full projects based on the following criteria: scientific quality, appropriateness and suitability of approaches, logic of the plan and experimental methods, probability of success and long-term sustainability of the research program.

Eligible projects, selected by the FSD Scientific Committee based on the criteria mentioned above, will enter the third and final evaluation step.

Third: The Scientific Committee will choose, among the fundable proposals, those that best fit the scope and objectives of the call.

All applicants will receive a written explanatory statement at the end of the evaluation process. The evaluators are subject to strict confidentiality regarding the matters of which they become aware during the review process.

To be eligible for this call, applicants must be scientifically independent and affiliated with a public or private research entity; Early career researchers, i.e., senior postdoctoral fellows, research associates, and assistant professors are eligible for this call provided that their affiliation with the host institution is assured throughout the funding period. The host entities must sign a formal statement in such case.

International applicants, whatever their ethnic origin, religion, age, gender and ability are called to apply to this program.

Collaborative projects involving more than one research group at the national or international level will be positively evaluated. Only one application per research group will be accepted. Exceptionally, in the case of collaborative projects, the same research group may submit more than one project as long as the collaborating groups are different in each project.

Entities, centres, research teams and principal investigators who have received funding, directly or indirectly, from FSD in the past must have fulfilled any and all contractual obligations to FSD, including but not limited to interim or final financial and project reports, to be eligible for this call for proposals.

FSD reserves the right to declare this call null and void if the quality of the proposals is considered insufficient or not suitable. FSD also reserves the right, at its discretion and without prior notice, to change, modify, add, or remove the portions of this call that it deems appropriate at any time.

Once the research project has been accepted, the applicant’s host entity must sign a letter of agreement that must be printed on paper and stamped with the official letterhead of the host entity. The scanned copy of this letter, in pdf format, must be sent to FSD via email to research@dravetfoundation.eu no later than fifteen (15) days after project approval.

The successful applicants must provide an interim scientific report at a time to be defined according to the characteristics of the selected project, and a final report at the end of the funding period, both including financial details as proof of the use of the awarded funds. In addition, FSD kindly requests that award recipients diligently report any delays, changes or unexpected results. It is anticipated that FSD may invite or request award recipients to present their progress at the FSD Annual Family Meeting and/or the FSD Annual Scientific Conference.

Once the project is awarded, FSD will prepare a Grant Agreement. This agreement, written in Spanish or English, must be signed by the grant holders and their entities as well as by FSD, highlighting, among others, the following conditions:

  • The start date of the project must not be later than September 1, 2021.
  • Interim and final scientific and financial reports will be presented by the funded group to FSD. These reports will determine the continuity of funding by FSD.
  • No indirect costs will be covered with this grant.
  • The intellectual property and the income distribution derived from the discoveries made from the awarded project will be subject to post-award negotiations between FSD and the Entity of the awardee.

Contact details for further information – Dravet Syndrome Foundation Spain Research Team
research@dravetfoundation.eu

¡Haz tu donación!

Tu aportación se destinará a ayudar a nuestros guerreros y sus familias en su lucha contra el síndrome de Dravet, para conseguir que no pierdan nunca la sonrisa.

Esperanza

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TERMS & CONDITIONS

The European Dravet Syndrome Advanced Therapies (EDSAT) Meeting 2022 is organised by Dravet Syndrome Foundation Spain, whose registered office is located at Calle Doctor Fleming, 30, 28036 Madrid, Spain.

The conference shall take place at the Illustrious Official College of Physicians of Madrid, at Calle de Santa Isabel, 51, 28012 Madrid, Spain, on Friday 1st of April 2022. Attendance to this conference is free of charge, but mandatory for organisational reasons. Participants must register online at www.dravetconference.com. Upon registration, each participant will receive an electronic confirmation by email. On-site registration will be not be possible. If a participant has not received the official email registration confirmation within 3 days, they must contact the conference secretariat at research@dravetfoundation.eu.

The conference registration includes: Attendance to all sessions, oral sessions and visual presentations. The conference registration includes all coffee breaks, lunch breaks, and conference documentation with all information about the event. The registration does not comprise travelling, accommodation costs or any other personal expenses.

The conference registration includes: Attendance to all sessions, oral sessions and visual presentations. The conference registration includes all coffee breaks, lunch breaks, and conference documentation with all information about the event. The registration does not include travel or accommodation costs or any other personal expenses.

Admittance to the conference without registration cannot be granted.

Conference Attendance

Upon arrival at the Illustrious Official College of Physicians of Madrid the day of the event, all participants have to register at the onsite Conference Registration Desk. The desk will open on 1st of April at 8:30 a.m. Upon registration at the registration desk, the conference team will provide participants with information about the event and a badge, which should be worn visibly at all times. The personalised badge authorises participants to attend all conference sessions, lunch and coffee breaks.

 

Cancellation Conditions

Dravet Syndrome Foundation Spain reserves the right to cancel any registration forthwith and without liability on its part in the event of any damage to, or destruction of the venue by fire, shortage of labour, strikes, industrial unrest, or any other cause beyond the control of the Dravet Syndrome Foundation Spain, which shall prevent it from performing its obligations. In these circumstances, every effort will be made to find an alternative venue or propose a new date for the conference. Should the conference be cancelled for any reason, airfares, hotels, or other costs incurred by the participants are not reimbursed by the Dravet Syndrome Foundation Spain.

Any participant is allowed to cancel his/her registration but must notify this to the conference organisers by e-mail at research@dravetfoundation.eu.

Name Change

All registrations are only valid for the respective person mentioned in the form. A registered participant unable to attend the conference may nominate (free of charge) a substitute participant by notifying the conference organisers by email at research@dravetfoundation.eu before 24th of March 2022. The procedure allows giving the last name, first name, and email address of the new participant.

Personal Data

Upon registration, the participant authorises Dravet Syndrome Foundation Spain to use their personal data stated above to inform the participant of any further conferences, events, or information concerning the conference and Dravet Syndrome Foundation’s activities. The conference booklet online and in print will only contain authors, titles, and affiliations of submitted abstracts, but no full abstract texts. Conference certificates will be sent to the participants as a PDF document upon request at research@dravetfoundation.eu. Only the name & affiliation will be stated in the certificate, not the email addresses of the participants.
Information is collected by an automated computer system that manages registrations. Security and confidentiality are guaranteed by state-of-the-art technical tools. However, Dravet Syndrome Foundation Spain declines any responsibility concerning data security transmitted through the internet.

Photography
The conference is held in public; therefore, we do not ban participants, exhibitors, partners and other companies from taking photographs of conference activities and participants, and share it via social media. By participating in the conference, you approve that general pictures will be taken and used for our Social Media output, our websites and other communication purposes. You hereby waive any right to oppose, and expressly authorise the organiser to make them available on the Internet or as it may seem fit.

Disclaimer
The conference organiser cannot be held responsible for any loss, injury or damage to any property, whatever the cause may be. Should, for any reason outside the organiser’s control (e.g., political or economic circumstances or a case of ‘force majeure’), the venue or speakers change, or the event be cancelled, the organiser will endeavour to reschedule, but shall not be held responsible for any costs, damages or expenses incurred by the participants. If for any reason the organiser decides to make material changes to this conference, the organiser is not responsible for airfares, hotels or other costs incurred by the participants. The participant takes part in the conference, all tours, and trips at his own risk.

Copyright
The participant is allowed to use the conference documentation exclusively for his/her personal needs.

TERMS & CONDITIONS

The Dravet Syndrome Conference 2022 is organised by Dravet Syndrome Foundation Spain, whose registered office is located at Calle Doctor Fleming, 30, 28036 Madrid, Spain.

The conference shall take place at the Illustrious Official College of Physicians of Madrid, at Calle de Santa Isabel, 51, 28012 Madrid, Spain, on Thursday 31st of March 2022. Attendance to this conference is free of charge, but mandatory for organisational reasons. Participants must register online at www.dravetconference.com. Upon registration, each participant will receive an electronic confirmation by email. On-site registration will be not be possible. If a participant has not received the official email registration confirmation within 3 days, they must contact the conference secretariat at research@dravetfoundation.eu.

The conference registration includes: Attendance to all sessions, oral sessions and visual presentations. The conference registration includes all coffee breaks, lunch breaks, and conference documentation with all information about the event. The registration does not comprise travelling, accommodation costs or any other personal expenses.

The conference registration includes: Attendance to all sessions, oral sessions and visual presentations. The conference registration includes all coffee breaks, lunch breaks, and conference documentation with all information about the event. The registration does not include travel or accommodation costs or any other personal expenses.

Admittance to the conference without registration cannot be granted.

Conference Attendance
Upon arrival at the Illustrious Official College of Physicians of Madrid the day of the event, all participants have to register at the onsite Conference Registration Desk. The desk will open on 31st of March at 8:30 a.m. Upon registration at the registration desk, the conference team will provide participants with information about the event and a badge, which should be worn visibly at all times. The personalised badge authorises participants to attend all conference sessions, lunch and coffee breaks. 

Cancellation Conditions
Dravet Syndrome Foundation Spain reserves the right to cancel any registration forthwith and without liability on its part in the event of any damage to, or destruction of the venue by fire, shortage of labour, strikes, industrial unrest, or any other cause beyond the control of the Dravet Syndrome Foundation Spain, which shall prevent it from performing its obligations. In these circumstances, every effort will be made to find an alternative venue or propose a new date for the conference. Should the conference be cancelled for any reason, airfares, hotels, or other costs incurred by the participants are not reimbursed by the Dravet Syndrome Foundation Spain.

Any participant is allowed to cancel his/her registration but must notify this to the conference organisers by e-mail at research@dravetfoundation.eu.

Name Change
All registrations are only valid for the respective person mentioned in the form. A registered participant unable to attend the conference may nominate (free of charge) a substitute participant by notifying the conference organisers by email at research@dravetfoundation.eu before 24th of March 2022. The procedure allows giving the last name, first name, and email address of the new participant.

Personal Data
Upon registration, the participant authorises Dravet Syndrome Foundation Spain to use their personal data stated above to inform the participant of any further conferences, events, or information concerning the conference and Dravet Syndrome Foundation’s activities. The conference booklet online and in print will only contain authors, titles, and affiliations of submitted abstracts, but no full abstract texts. Conference certificates will be sent to the participants as a PDF document upon request at research@dravetfoundation.eu. Only the name & affiliation will be stated in the certificate, not the email addresses of the participants.

Information is collected by an automated computer system that manages registrations. Security and confidentiality are guaranteed by state-of-the-art technical tools. However, Dravet Syndrome Foundation Spain declines any responsibility concerning data security transmitted through the internet.

Photography
The conference is held in public; therefore, we do not ban participants, exhibitors, partners and other companies from taking photographs of conference activities and participants, and share it via social media. By participating in the conference, you approve that general pictures will be taken and used for our Social Media output, our websites and other communication purposes. You hereby waive any right to oppose, and expressly authorise the organiser to make them available on the Internet or as it may seem fit.

Disclaimer
The conference organiser cannot be held responsible for any loss, injury or damage to any property, whatever the cause may be. Should, for any reason outside the organiser’s control (e.g., political or economic circumstances or a case of ‘force majeure’), the venue or speakers change, or the event be cancelled, the organiser will endeavour to reschedule, but shall not be held responsible for any costs, damages or expenses incurred by the participants. If for any reason the organiser decides to make material changes to this conference, the organiser is not responsible for airfares, hotels or other costs incurred by the participants. The participant takes part in the conference, all tours, and trips at his own risk.

Copyright
The participant is allowed to use the conference documentation exclusively for his/her personal needs.