Research Funding Protocol

Funding Protocol

Funding Policy

The CGF aims to promote and fund research into the causes and cure of growth and endocrine disorders. The charity may also consider requests for the purchase of equipment or for financial support to deliver conferences or training programmes.


The management committee will nominate one trustee to oversee research funding. Requests for funding will be sent to the nominated trustee who will circulate them to the other members of the management committee unless they clearly do not meet the funding policy.

The nominated trustee will prepare a report on research funding for each management committee meeting. The report will be published in the next issue of the newsletter.

The CGF staff will take responsibility for the administration of the projects and arrange payment of invoices.


The CGF is pleased to consider requests for funding from appropriately qualified medical professionals or university research groups. The CGF may also issue invitations for research proposals on topics that have been identified by trustees or members of the charity.

When unsolicited requests are received, the proposals will be circulated to trustees and a funding decision will be taken on the basis of a simple majority. Discussion of any proposal will normally take place at management meetings but urgent decisions may be taken using email. Where appropriate, the trustees may seek professional advice regarding the merits of research proposals.

When a research topic is identified by the CGF, a statement of requirements will be prepared. The management committee may engage the help of BSPED or other professional organisations to prepare the invitation to bid and to evaluate proposals. The invitation to bid may be announced in the open literature or targeted to a selected group of potential applicants.


Principal investigators will be required to sign research agreements that include the following details

  • Starting date and duration of project
  • Payment terms
  • Reporting procedures (e.g. quarterly progress reports, six monthly meetings, final report)
  • Confirmation of ethics approval, if necessary
  • Ownership of intellectual property, if appropriate
  • Acknowledgement of CGF financial support in all external publications




Research projects will usually be funded from unrestricted funds. However, the CGF will also consider offers of restricted funding from pharmaceutical companies or other organisations to support specific projects.  The honorary treasurer must authorise all research funding.


The monitoring procedure will depend on the duration of the project and the financial commitment involved and will be specified in each agreement. As a minimum, principal investigators will be required to submit a short progress report at six monthly intervals but for larger projects, trustees and / or staff may hold review meetings with the principal investigator.

If, as a result of these monitoring procedures, a project is deemed to be making unsatisfactory progress, the principal investigator will be informed in writing. Subsequent invoices will not be paid until agreed research objectives have been met or a satisfactory explanation for the lack of progress has been provided.


As well as submitting regular progress reports as detailed in the research agreement, the principal investigator will also be expected to

  • Publish as widely as possible in the open literature (financial support from CGF should be acknowledged in each case)
  • Produce an article for the newsletter
  • Give a presentation at the convention (if invited)


On completion of research programmes, the outcomes will be evaluated, with the help of professionals if necessary. The projects will be assessed on the basis of the following criteria

  • The number of publications in peer reviewed journals, arising directly from the funded project
  • Whether the agreed timescales were met and if not, why not
  • Whether the research objectives were met in full
  • What outcomes were of direct benefit to CGF members

This information will be recorded in a single proforma and retained for at least five years. The proforma will be presented at the next meeting of the Management Committee and a decision will be taken as to whether future proposals would be considered from the same research group.

RSS Clinical Scoring System

A prospective study validating a clinical scoring system and demonstrating phenotypical-genotypical correlations in Silver-Russell syndrome:

Some of you may know, The Magic Foundation’s RSS/SGA R&E Fund, in conjunction with Dr Harbison and Dr Netchine, began an RSS phenotype-genotype study back in 2008. This study resulted in a new, statistically strong, RSS clinical scoring system (which we have been using in our free screenings). Effective TODAY, you can click on the link below and receive a free copy of our study article, which has been published in the Journal of Medical Genetics.  

Our scoring system (now called the Netchine-Harbison RSS scoring system) can help aid physicians in determining which subjects should undergo RSS genetic testing versus molecular testing for other possible causes for the child’s growth failure and physical characteristics. One highlight about our study findings – our scoring system captured 100{fe5bd5ca0c2c4a6685f9dc029ab1d2b4af61eb7fb96404e596c9a7d88178930a} of the children who would later test positive for 11p15LOM and all but one child who tested positive for matUPD7. The article also includes a screening input form and directions to assist local doctors. Thank you to so many of you for either participating in the study and/or making donations along the way enabling us to complete this ground-breaking study.