Team Grant: Improving Health and Administrative Data and Monitoring for Rare Diseases

Eligibility

For an application to be eligible, all the requirements stated below must be met:

1. The Nominated Principal Applicant (NPA) must be one of the following:
   1. an independent researcher affiliated with a Canadian postsecondary institution and/or its affiliated institutions (including hospitals, research institutes and other non-profit organizations with a mandate for health research and/or knowledge translation);
      OR
   2. an individual affiliated with an Indigenous non-governmental organization in Canada with a research and/or knowledge translation mandate;.
      OR
   3. an Indigenous non-governmental organization in Canada with a research and/or knowledge translation mandate.
2. The NPA must have their substantive role in Canada for the duration of the requested grant term.
3. The Institution Paid must be authorized to administer CIHR funds before the funding can be released (see Administration of Funds).
4. The research team must include an Early Career Researcher (ECR) identified as a Principal Applicant (PA).
5. The applicant team must include team members in the role of PA or Co-Applicant involved in clinical and administrative data management from a minimum of three (3) provinces/territories.
6. The team must include at least one of each of the following in the role of PA or Co-Applicant:
   1. Clinician; AND
   2. Health economist.
7. The team must include at least one of each of the following in the role of Principal Knowledge User (PKU), Knowledge User (KU), PA, or Co-Applicant:
   1. Decision maker or policy maker; AND
   2. Healthcare professional (other than clinician).
8. The team must include at least one patient/caregiver/family member in the role of PKU, KU or Co-Applicant.
9. The applicant team must have a Sex and Gender Champion and an Equity, Diversity and Inclusion (EDI) Champion:
   1. Combined, the champions must have experience in (i) sex- and gender-based analysis (SGBA) or with gender diversity in the community; (ii) fostering EDI in research and/or applied settings (e.g., promoting equitable access to research participation or inclusion of typically underrepresented population groups in decision making), and (iii) creating Sex and Gender and EDI plans for diversity of team composition;
   2. These individuals may hold other roles within the team in addition to standing as the team's Sex and Gender and EDI champions;
   3. The Sex and Gender and EDI champion roles may be served by the same individual or different individuals.

10. The NPA* and the Sex and Gender Champion (if different from the NPA) must have successfully completed the appropriate SGBA training module(s) available online through the CIHR Institute of Gender and Health and submit a Certificate of Completion. Applicants are encouraged to review the "How to integrate sex and gender in research" section on the CIHR website. See How to Apply for more details.

    *Organizations as NPAs: For organizations applying as the NPA, a representative of the organization must complete the training module on the organization's behalf.

11. For applications involving research with Indigenous Peoples the research team must include at least one applicant who self-identifies as Indigenous (First Nations, Inuit or Métis) and/or provides evidence of having meaningful and culturally safe involvement with Indigenous Peoples.

Summary

The purpose of this funding opportunity is to support implementation research to determine the prevalence, direct cost, and burden of rare diseases in the Canadian health care systems. This effort will enable prospective research for patients in Canada by allowing their identification in the administrative databases. It is expected that the new knowledge generated through this funding opportunity will lead to more accurate and equitable partitioning of resources (e.g., diagnosis, treatment, research, indirect support for patients and families), based on the burden of rare diseases and impact on the health care system, patients, and their families. Importantly, the funded research will inform the required adaptations to the administrative coding system used in Canada to appropriately capture rare diseases data.

The specific objectives of this funding opportunity are to:

• Demonstrate the feasibility of tracking rare diseases and conducting prospective studies in this field within the Canadian health care systems;
• Increase cross-jurisdictional collaboration and data sharing amongst hospitals;
• Prospectively assess the impact of mortality, co-morbidities, hospital usage, other health system usage, and total direct cost of rare diseases to the health care system; and
• Facilitate the establishment of patient registries for potential enrollment by a diversity of people in Canada in clinical trials and to enable patient and caregiver peer-to-peer contact.

Overhead

n/a

Application deadlines

RSO final internal review deadline

Program application deadline

NOTE: Consult your Faculty Associate Dean (Research) (ADR) regarding Faculty-specific deadlines and submission processes.

Principal Investigators: Complete a Research Management System (RMS) record, including a copy of your complete application, and submit this for approvals in RMS.

Postdocs, students, and trainees: For fellowships and externally-sponsored research training awards or opportunities, you must complete the Research Funding Application Approval (RFAA) Trainee PDF form, and submit it, along with a complete copy of the application, to Research Services at rsotrainee@ucalgary.ca. Trainees should not use RMS at this time.

Approvals: The University of Calgary requires that all funding applications be approved prior to submission. Approval requires signatures via either RMS or the RFAA Trainee form, in the following order:

• Principal Investigator
• Department Head
• Faculty ADR/Dean
• Research Services (on behalf of the Vice-President Research)

Read the Meaning of Grant Signatures policy to understand what your approval means. Please see the agency guidelines for details about which signatures are required on your application, as it may differ from internal requirements.

Late submissions: Late submissions will only be accepted in cases of medical or family emergencies, or other exceptional circumstances. If you submit your RMS record to Research Services after the internal deadline has passed, you must secure additional approvals. Please read: Late Applications Process.

Webinar:

CIHR will be hosting the following webinar to support participants with the requirements of the funding opportunity “Team Grants: Improving Diagnosis for Rare Disease Patients; and, Team Grant: Improving Health and Administrative Data and Monitoring for Rare Diseases” and to answer questions on how to apply.

When: Tuesday, September 26, 2023, at 11:00 am MT
Duration: 60 minutes | Join

Submission Process:

Full application, plus approvals in RMS, will be required by RSO by noon on November 2, 2023. Please be sure to select "Submitted for approvals" (Under Save & Progress) in RMS in enough time to allow for approvals from your Department Head and/or ADR prior to the internal RSO deadline. Consult your department and faculty for more information on their approval processes and timelines.

Do not submit through ResearchNet until RSO's signature has been granted!! 

Once institutional signature has been obtained, the NPA will receive an automated message from RMS to their ucalgary email address. A copy of the CIHR signature page will be available via the RMS record, under Documents. Upload the CIHR signature page and routing slip in the Print/Upload Signature Pages task in ResearchNet by 6:00PM Calgary time on November 7, 2023.