MRCG-HRB Research Co-Funding Scheme Call for Expressions of Interest – deadline 06 September 2019

Cystinosis Ireland is seeking Expressions of Interest for the MRCG-HRB Joint Funding Scheme 2019

Deadline: 06 September 2019

The 2019 MRCG-HRB Joint Research Funding Scheme will be formally launched by the Irish Health Research Board (HRB) and the Medical Research Charities Group (MRCG) in late September or early October 2019.

Cystinosis Ireland participates in the MRCG-HRB Joint Research Funding Scheme in which patient organisations, such as Cystinosis Ireland, and the HRB share the cost of funding high quality research activities of particular relevance to the patient organisation.

A maximum of €300,000 may be awarded to successful projects of between 12 and 36 months duration.

Funding is available to researchers worldwide.

Cystinosis Ireland is seeking expressions of interest from researchers worldwide who are interested in applying to this research funding scheme with Cystinosis Ireland as the co-funding partner to allow us plan ahead for the charity’s review process.

Indicative timelines for the MRCG-HRB Joint Research Funding Scheme are provided below.

If you are interested in applying to the MRCG-HRB co-funding scheme with Cystinosis Ireland as the co-funding partner, please submit the following information by email to us at: RESEARCH@CYSTINOSIS.IE:

  1. Title of the proposed research project.
  2. Short description of the research proposed and the potential impact for patients living with cystinosis (please use lay person’s language).
  3. 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).
  4. Names of one or two potential peer reviewers unconnected with the proposed research or researchers.

Based on previous years, the indicative timeline (exact dates will be confirmed when call is launched) is as follows:

HRB Call Opening October 2019
Cystinosis Ireland Call Open September – November 2019

Deadline for submitting proposals to Cystinosis Ireland is 15 November 2019

Charity Peer Review November 2019 – January 2020
Charities forward all applications to HRB February 2020 – HRB to confirm this deadline
Researcher Right-to Reply to Reviews Phase Early – mid February 2020
Charity Selection Committee Late Feb-March 2020
HRB Application Deadline  April 2020 – HRB will have to confirm this deadline
Joint Funding Committee Meeting Early June 2020
HRB Board Meeting June 2020
Applicant Notification July 2020
Contracts Issued From August 2020
Research Project Start Date From September 2020

Examples of research projects that Cystinosis Ireland has supported to date include:

  • Drug eluting contact lenses for cystinosis therapy
  • Developing human stem cell models for cystinosis and the therapeutic potential of aspartate
  • Unravelling the mechanisms of azoospermia and potential future treatments in Male cystinosis treatments
  • Targeting autophagy in nephropathic cystinosis
  • Development of a more effective cystinosis disease model using rats
  • Generation of isogenic cystinotic and healthy ciPTEC cells for more effective drug screening.
In addition to these areas, Cystinosis Ireland is also particularly interested in the following research topics:
  1. Side effects of cysteamine – halitosis and body odour become major issues as children age and this interferes with the level of adherence to cysteamine.  It also causes major psychological issues.  Work had been done on developing new compounds but something that would work with cysteamine would be very welcome.  Concern about other side effects of cysteamine – for example, Ehler Danlos-type symptoms, collagen issues and subsequent death in one patient. What other effects is it having that we don’t know about?
  2. Muscle weakness – swallowing problems have led to aspiration and death in some patients plus weakness in other muscles such as hands, legs, arms.  Even patients who adhere well to their drug therapy have these issues.  Is it caused by cysteamine and/or the cystinosis disease?
  3. Bone issues, including knock knees, which occur in most children whatever level of drug therapy adherence; spontaneous fractures and weak bones. Nearly all children have flat feet/fallen arches. These are in children who are well maintained on vitamin D, calcium etc and who have had diagnosis at birth.
  4. In early childhood, not eating is a major issue.  Most children need a g-tube for feeding after diagnosis.   There’s a question as to whether the cysteamine treatment or the cystinosis itself is the main reason for lack of appetite/not eating.  A lack of eating has knock-on effects for life.
  5. Developing models of care transition from childhood care to adult care in the health service
  6. Examining the social impacts of long-term childhood disease and also the impacts of treatment(s) on patient lives

Cystinosis Ireland is also open to proposals in other research areas that have potential to improve the lives of people living with cystinosis and their families.

Cystinosis Ireland welcomes applications from researchers from scientific fields other than Biosciences and Clinical Sciences where there the potential impact or application of the proposed research is relevant to patients and families living with cystinosis. This includes scientists in social sciences, engineering and other disciplines.