Dravet Canada Research Award
Well-being, Health and Biomedical Discovery
Deadlines
Academic Unit:
Memorial Deadline: Inquire with RGCS
External Deadline: Friday 13th, October 2017
Description
Dravet Canada is the Canadian Network for families, friends and caregivers of individuals with Dravet spectrum disorders.
Letters of Intent will be received until October 13, 2017. Letters of Intent will be reviewed and those short-listed will be requested to complete applications.
Announcements of winners is anticipated by International Dravet Awareness Day, June 23rd, 2018.
Dravet Spectrum Disorders are rare and catastrophic forms of epilepsy that begin in infancy. Children suffer from multiple types of seizures and many associated conditions including behavioural and developmental delays, movement and balance issues, delayed language, speech issues.
Current treatment options are extremely limited, resulting in diminished quality of life and a poor prognosis for these children. Needless to say, the burden on these families is significant.
The goal of our Network is to support individuals and families affected with this type of epilepsy and to promote research so that one day there may be an effective treatment to prevent the disabilities associated with this disorder or perhaps a cure.
-
Summary and Background
Dravet Canada is the Canadian Network for families, friends and caregivers of people with Dravet spectrum disorders and is registered in Canada as Charitable organization # 850807843RR0001.
Dravet Canada receives and maintains funds and will apply all or part of the principal and income therefrom, from time to time, to qualified donees as defined at section 149.1(1) of the Income Tax Act (Canada).
The goal of our Network is to support individuals and families affected with this type of epilepsy and promote research so that one day there may be an effective treatment to prevent the disabilities associated with this disorder or perhaps a cure.
With this LOI, provide sufficient information to make fair and responsible decisions regarding research funding, without making the process unnecessarily complicated and onerous on the part of the investigators or our reviewers.
-
Inquiries and Submissions
All enquiries related to this Request for Research Proposal (RFP), including any requests for information and clarification, are to be directed via email to research@dravet.ca. Queries will normally be responded to within 24 hours.
Delivery of Proposals
Proposals are to be submitted by mail or e-mail to:
Dravet.ca – Research
6 – 2400 Dundas St. West Suite# 211
Mississauga, Ontario L5K 2R8
Email: research@dravet.ca
-
Proposal Guidelines
All proposals must include the following information:
Principal Investigator: This is the owner of the project, the team leader who is responsible for all research, procedures and follow-up for this project. All proposals must be signed by the principal investigator.
Project Contact: This is the administrative lead, who we contact when we have questions.
Project Title: If the final title of the project has not been decided, supply the working title. This must be supplied in English and French.
Other partners: e.g. Suppliers of product to be used in Clinical Trial.
Other Funding Partners: Please include confirmed sponsors and funding you will wait on before beginning your project.
Project description:
Dravet Canada is seeking to increase research into understanding, care, treatments and potential cures for Dravet spectrum disorders. We want to improve the lives of these patients and their families.
In a thousand words or less, please include the type of research project (basic science, clinical trial, another purpose); if this is a long-term project, what stage it is in; please also include end points, population, controls, what is considered success; will participants maintain access to the medication after a trial has ended.
- Project Scope:
Will you be studying Dravet spectrum disorders specifically, an aspect of them, an aspect of a larger group of disorders? Please describe
Patient Engagement:
Describe your Patient Engagement Strategy for the life cycle of the research project (from study design to knowledge translation). E.g. for “clinical trials”, access to medication at completion of trial; patient discussions before deciding endpoints.
In which institution(s) and clinic(s) will the research be conducted.
- Request for Proposal and Project Timeline:
Expected start date (when do you expect to have all permissions and funding in place to start)
Expected completion date (primary target date for first and other defined phases)
Length of the project (months/years)
- Budget
Funding (sources, methods…)
Please specify funding Amount Requested, what percentage of the overall budget will this represent, how will these funds be utilized, and the estimated annual budget for each year of the project.
Will the project proceed before full funding is realized? If so, what percentage is necessary to begin each stage.
- Oversight:
Please list Ethics Board and other human research approvals, fiduciary oversight committees, what safety and data monitoring will be in place throughout the project, will there be other independent committees reviewing the data as it is collected (e.g. Steering Committee).
Deliverables:
We require your agreement to provide us with copies of/access to forthcoming reports (e.g. quarterly reports submitted to Dravet Canada Board of Directors) and acknowledgement of funding from Dravet Canada in research articles and knowledge translation activities (such as presentations).
What other deliverables do you expect to generate, and when? E.g. publications, types, amount expected, open access, federally funded, grey literature, quarterly or other.