The Worldwide Cystinosis Community Advisory Board (Cystinosis CAB)
An opportunity HCRI-HRB Applicants to Avail of Structured Public Patient Involvement (PPI) – deadline 18 October 2019
As you are aware, PPI in research is a key objective for the HRB and Cystinosis Ireland and will be an important evaluation aspect of all funding applications to the HCRI-HRB Joint Funding Scheme 2020.
In this context, we would like to make you aware that cystinosis patient groups in Europe, the US and further afield have come together and formed the Worldwide Cystinosis Community Advisory Board (Cystinosis CAB). Cystinosis Ireland is a founder member of the Cystinosis CAB.
Under the mentorship of EURORDIS, the Cystinosis CAB meets with researchers and others to engage at the very earliest stages of research planning. The Cystinosis CAB members are from cystinosis patient organisations worldwide and they are receiving training in research development, the drug development process and everything associated with medical and scientific research in general. They are an educated and informed panel of patient experts in cystinosis.
The Cystinosis CAB will be meeting at the end of October 2019 to review research and do other work.
This presents a significant opportunity for prospective applicants to the HCRI-HRB Joint Funding Scheme 2020 to get PPI feedback from patient stakeholders at the early stage of planning research proposals.
As part of the PPI aspect of the HCRI-HRB Joint Funding Scheme 2020, Cystinosis Ireland would like to request the Cystinosis CAB to review all applications for this scheme.
We strongly encourage you to avail of this opportunity.
How can Applicants avail of this PPI opportunity?
Applicants can avail of the input of the Cystinosis CAB by submitting to us a short briefing document (approximately 1-2 pages ) would need to be submitted to [email protected] before 5pm GMT on 18 October 2019 so that the Cystinosis CAB members have an opportunity to constructively review them.
The Cystinosis CAB members will meet to review each proposal and offer recommendations, etc to improve it. Feedback from the Cystinosis CAB will be provided quickly to allow proposers make any amendments to proposals as necessary. I would like to assure all researchers that the Cystinosis CAB process is completely confidential. No information will be shared beyond the group without the explicit consent of the researcher(s) involved.
The Cystinosis CAB is cognizant of not increasing the workload on applicants any more than necessary. However, in order to provide useful and constructive feedback, the Cystinosis CAB requires the following information (approx. 1-2 pages; please use lay oriented language aimed at a non-scientific but very well informed patient/patient representative audience):
- Title of proposed research project
- Description of the research proposed and the potential impact for patients living with cystinosis (use lay person’s language)
- Proposed research methodology – In particular, please include any information that you feel might be relevant to how you think that people living with cystinosis might beneficially influence the proposed research design, plan, implementation, outputs etc
- Please state if you plan to have research collaborator(s) from Ireland or elsewhere (it is not an essential eligibility criterion to have an Irish collaborator) and provide the name(s) of the proposed collaborator(s) – please update if necessary
- How do you propose to engage in PPI during the research project life cycle?
Please note: this is a separate process to Cystinosis Ireland’s peer review process and HRB’s subsequent peer review processes.
It is not a peer review process. It is a patient involvement process.
The Cystinosis CAB’s involvement and recommendations should be highlighted strongly in your final application. PPI is not about engaging patients is a superficial way. Patients and patient representatives should be an integral part of the process, involved in study design as much as possible and where patients are not involved, the reasons should be given. The Cystinosis CAB will also be relevant throughout a proposed research project life cycle.
Cystinosis Ireland’s deadline for the submission of full proposals is 15 November 2019.
This as an opportunity to strengthen the cystinosis research proposals being submitted to the HCRI-HRB Joint Funding Scheme 2020.