Apply for a New Study or Survey
The CPSP invites investigators to apply to use its timely, national active surveillance system to increase understanding of rare childhood diseases and conditions. The CPSP offers two ways to obtain data from approximately 2700 paediatricians and paediatric subspecialists from across Canada: multi-year studies and one-time surveys.
CPSP studies and one-time surveys span a range of topic areas including rare diseases, rare complications of more common conditions, emerging infections, and issues of paediatric public health and safety. Click here for ideas.
To help decide between applying for a multi-year study or a one-time survey, here are some differences to consider:
Key differences between CPSP studies and surveys
|
Criteria |
Multi-year surveillance study |
One-time survey |
| Purpose | Continuously monitor a rare or emerging health condition in the Canadian paediatric population over time for public health action. | Gather survey data on a rare or emerging health condition in the Canadian paediatric population at a specific point in time to inform public health decision making. |
| Focus | Provides a continuous picture in real time. | Provides a snapshot at a single point in time. |
| Timing | Prospective. | Retrospective. |
| Frequency of data collection | Continuous for 1–3 years (or longer). | One time. |
| Reporting forms |
|
Brief one-time survey questionnaire |
| Questionnaire length |
|
|
| Data elements | Condition-specific, case-level data. | Information respondents can easily recall without consulting the patient chart. |
| Data source | Existing medical records. | Survey respondent’s memory. |
| Estimates minimum incidence / prevalence |
Yes. | Limited due to potential sampling/response biases, inability to exclude duplicate case reports, and difficulty defining the population denominator. |
| Response rates |
|
25–50% |
| Ethics approval |
|
Not required. |
Why apply?
Here are some of the benefits of conducting a CPSP study or one-time survey:
Improve child and youth health: Conducting a CPSP study or one-time survey gives you the chance to make a difference in the health and well-being of children and youth with rare diseases. Study and survey results inform clinical practice, influence public health policies, and increase awareness of rare paediatric conditions among the health care community. Ensuring medical and public health impact is central to the surveillance mandate of the Program. For information on past successes, click here.
Timely surveillance: Each month, CPSP participants receive a form outlining the conditions under study and notify the Program if they have seen a case in the prior month or have nothing to report.
High case ascertainment: For multi-year studies, monthly case report forms are sent to a nationally representative sample of approximately 2700 Canadian paediatricians and paediatric subspecialists, with an average monthly response rate of 80%. The average rate of return for clinical questionnaires is 83 to 93%. Reminders are sent monthly to participants with outstanding reports to maximize response rates. For one-time surveys, the average response rate ranges from 25 to 50%. Two reminders are sent to participants over the survey period.
Cost effective: The stable CPSP infrastructure for studies and one-time surveys provides a cost-effective way to gather detailed incidence, demographic, and clinical data on rare diseases and uncommon paediatric conditions in Canada.
Access to CPSP expertise: Study teams can seek guidance from the CPSP office and the CPSP Scientific Steering Committee before, during, and after the project. The Scientific Steering Committee is composed of experts in public health and surveillance methods, academic clinicians from diverse subspecialities, and community paediatricians from a variety of practice settings.
Scientific review: Study proposals and one-time surveys undergo a rigorous review by the CPSP Scientific Steering Committee. Study proposals are also reviewed by at least one research ethics board.
Knowledge translation: The CPSP works with investigators to facilitate knowledge translation through publication in peer-reviewed journals, presentations at scientific conferences, and dissemination of results to key stakeholders. CPSP investigators can access a variety of knowledge translation tools through the Canadian Paediatric Society (CPS). These include CPS Blog, social media channels, communication with CPS committees and sections, the CPS journal, Paediatrics & Child Health. Study and survey results are published in the annual CPSP Results and integrated into Pedagogy, the CPS online learning platform.
International collaboration: The CPSP offers an opportunity to collaborate with paediatric surveillance units worldwide through its membership in the International Network of Paediatric Surveillance Units.
How to apply?
Applications to initiate a new CPSP multi-year study or one-time survey can be submitted at any time to the program manager at cpsp@cps.ca.
Study and one-time survey applications are reviewed by the CPSP Scientific Steering Committee at its spring and fall meetings. Applications must meet the evaluation criteria and be aligned with health priorities identified by the Public Health Agency of Canada and the Canadian Paediatric Society.
Successful CPSP studies and one-time surveys share the following attributes:
- The topic area relates to a rare disease (incidence less than 500 cases per year, with an optimal anticipated case count of approximately 250–300 per year), a rare complication of a more common condition, or an emerging threat to paediatric health and safety. Click here for more information.
- The disease/condition is seen by paediatricians or paediatric subspecialists and reporting will not cause undue burden on any one respondent or group of respondents.
- The team of investigators is multidisciplinary and includes national representation.
- Study or survey data will fill a recognized gap, for example, a lack of Canadian-specific information on the topic.
- Study or survey results will have a direct impact on clinical practice or public health policy.
Applying for a multi-year study
In general, completion of steps 1 to 6 requires approximately 12 to 24 months; however, in exceptional circumstances, this process can be expedited.
1) Contact the CPSP office
Contact us to discuss the appropriateness of the study topic for the CPSP platform, costs, and funding sources. We will arrange a meeting to discuss your idea and the appropriateness of the proposal. A widely based (geographical and appropriate specialties) team of investigators is encouraged. For a list of our current studies, click here.
2) Submit a letter of intent
Prepare a two- to three-page letter of intent (see Format for Submission) for review by the Scientific Steering Committee and submit it to the program manager at cpsp@cps.ca. You will be invited to present (in person or by videoconference) to the Committee at one of its biannual meetings.
3) Submit a study proposal and clinical questionnaire
Following approval of the letter of intent, prepare and submit a proposal, including a study protocol and clinical questionnaire (see Format for Submission) for review by the Scientific Steering Committee. You will be invited back to present these materials (in person or by videoconference) to the Committee at its next biannual meeting.
4) Revisions and final approval
The Scientific Steering Committee will provide you with written feedback to help you revise your package if needed. Revise and resubmit the study protocol and clinical questionnaire for final approval.
Beta-test the survey tool with several paediatricians practising in different clinical settings with different specialities who would have encountered a case of the target condition in the past. This beta testing verifies that the survey tool is clear and that the data elements requested are readily available in the medical chart and will capture meaningful, high-quality epidemiological information.
5) Ethical approval
- Obtain approval from the Health Canada and Public Health Agency of Canada Research Ethics Board. Investigators are strongly encouraged to also pursue research ethics board approval from other institutions of their choice (often their local health care institution or university).
6) Launch surveillance
Finalize study launch details with the CPSP office, including editing, translation, study promotion, and timing.
Applying for a one-time survey
In general, completion of steps 1 to 4 requires approximately six to nine months; however, in exceptional circumstances, this process can be expedited.
1) Contact the CPSP office
Contact us to discuss the appropriateness of the topic for a one-time survey, costs, and funding sources. In general, one-time surveys identify an epidemiologic “signal” and/or emerging public health issue. We will arrange a meeting to discuss your idea and the appropriateness of the proposal. For the list of previous one-time surveys, click here.
2) Prepare a survey proposal and survey questionnaire
Prepare a one- to two-page one-time survey proposal and a draft survey questionnaire (see Format for Submission) for review by the Scientific Steering Committee and submit it to the program manager at cpsp@cps.ca. You will be invited to present (in person or by videoconference) to the Committee at one of its biannual meetings.
3) Revisions and final approval
The Scientific Steering Committee will provide written feedback to help you revise your package if needed. Revise and resubmit the survey, if required, for final approval.
Beta-test the survey questionnaire with several paediatricians practising in different clinical settings with different specialities who would have encountered a case of the target condition in the past. This beta testing verifies that the survey tool is clear and that the data elements requested can be easily completed and will capture meaningful, high-quality epidemiological information.
4) Launch survey
Finalize survey launch details with the CPSP office, including editing, translation, survey promotion, and timing.
