(Previously called MRCG-HRB Joint Funding Scheme)

The HRCI-HRB Joint Funding Scheme 2020 (previously known as MRCG-HRB Joint Funding Scheme) was formally launched by the Irish Health Research Board (HRB) and by Health Research Charities Ireland (HRCI) on 1 October 2019.

Cystinosis Ireland participates in this HRCI-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 inviting applications from researchers worldwide who are interested in applying to this funding scheme with Cystinosis Ireland as the co-funding partner.

For more information on this funding scheme including application forms, information for applicants, indicative timelines and deadlines please click here.

Cystinosis Ireland is open to receiving applications in all areas of cystinosis research.

However there are areas of particular interest to us:

  1.  All aspects of basic cystinosis research, including molecular and cellular biology understanding of the cystinosis disease and the development of disease models;
  2. Development of new therapeutics and therapeutic targets including new drug development and stem cell therapies;
  3. Understanding and tackling ocular issues in cystinosis
  4. 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?
  5. 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?
  6. 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.
  7. 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.
  8. Developing models of care transition from childhood care to adult care in the health service
  9. Examining the social impacts of long-term childhood disease and also the impacts of treatment(s) on patient lives.

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

Cystinosis Ireland welcomes applications from researchers from scientific fields other than Biosciences and Clinical Sciences where 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.

For more details, please contact