Research Strategy
Chronic Granulomatous Disorder (CGD) is a rare inherited genetic condition affecting about six to
eleven people in every million. It is a complex life threatening condition. The aim of the CGD
Society (CGDS) is to be the leading source of support for individuals and families affected by CGD
throughout the world.
Our rationale in funding research is to identify better treatments and ultimately a cure for CGD
and to disseminate widely the outcomes of the research we fund. In this way we hope to save
lives, extend life and improve the quality of life for all those affected.
Our overall aims for the research we fund are to save lives, develop a cure, find better treatments,
and improve outcomes, diagnosis and care.
Our history of funding research
The CGD Society started funding research in 1992, when it was known as the CGD Research Trust.
Since then we have given £3.8M in financial support to a wide range of projects spanning the
research spectrum from basic laboratory work to treatments that have reached the clinic.
Funding by the CGD Society has contributed to the following advances:
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Development of gene therapy for X-CGD
Development new techniques to monitor immune recovery in patients after gene therapy
Establishment of CGD patient registry databases in the UK & mainland Europe
Greater understanding of the structure and function of the enzyme affected in CGD and
inflammatory mechanisms in CGD.
Work funded by the CGD Society and the CGD Research Trust has resulted in 90 publications and
three Ph.D. theses. A full list can be found here and shows the journey we have made in the
detailed understanding of CGD and the pioneering work leading to bringing gene therapy for CGD
into the clinic for patient benefit. It also highlights how our funding has impacted on other
conditions such as Crohn’s disease and in helping develop gene therapy for eye disease and X-SCID
(X-linked severe combined immunodeficiency). Our research funding has also leveraged over
£5.5M in research funding from other organisations.
There is very little government funded CGD research in the UK. For this reason it is important that
CGDS targets its research spend carefully and effectively.
Our strategy focuses on research that will help people with the X-linked and autosomal recessive
forms of CGD.
Our priority research areas are:
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Gene therapy
The CGDS will fund avenues of work to improve the design and safety of gene therapy
vectors and to explore new ways of correcting the genetic mutations that cause CGD. Due
to the costs involved we are unable to support the manufacture of gene vectors and
clinical trials.
 Infection
An inability to fight infections caused by bacteria and fungi is a hallmark of CGD and those affected
need antimicrobial prophylaxis. CGDS will support work that advances the development of better
treatment options for infections.
 Inflammation
As a result of the reduced ability of phagocytes in CGD to clear infections, patients can suffer from
troublesome, recurrent infections and inflammation. CGDS will support work that will lead to
improved and better-targeted treatment of inflammatory complications in CGD.
 Enzyme defect
A basic understanding of how parts of the enzyme NADPH oxidase work together to help kill
microbes is fundamental to developing new drug treatments for CGD. CGDS will support work that
will help understand how the genetic mutations in CGD affect the working of this key enzyme.
Our grant award scheme
CGDS is committed to spending £50,000 per year over the next three years on research. In doing
so we hope to bring projects to the point where researchers have enough data to seek funds from
other funding bodies.
Advertising and grant application timetable
The details and timetable of our grant rounds are posted on the CGDS website, circulated to
researchers on our database and advertised in the journal Nature.
Eligibility for funding
We have no geographical restrictions concerning the allocation of funding. The criteria for funding
are excellent science and relevance to and benefit for people affected by CGD. We will accept
applications from hospitals, universities and research centres of excellence.
The principal applicant should be in a tenured research position within their organisation. The
funding, subject to acceptance of our Terms and Conditions, is given to the department rather
than individual researchers.
What our funding will cover
CGDS funding is for the support of direct costs of research, that is, to cover salary and
consumables for persons employed on a research project. The salary costs of associated principal
investigators will NOT be considered.
CGDS grant awards cannot be used to support indirect costs examples of which include:
institutional overheads; subscription charges to professional organisations; financial services;
personnel services; recruitment costs; public relations; institutional libraries; departmental
services (administration, secretarial, printing, photography); telephone charges; postage and
courier services or directly allocated costs e.g. proportion of lead investigator or shared
technician’s time.
CGDS grant awards do not cover the costs for attendance at meetings and conferences. VAT or
equivalent taxes should not be included in the application and will not be paid.
How we access applications
Applications are subject to full peer review. CGDS is a member of the Association of Medical
Research Charities (AMRC), the UK organisation that ensures its members follow good practice in
research funding, including rigour, transparency and accountability in the selection process.
Grants are subject to Trustee approval and usually awarded within 2 months of our Research
Advisory Panel reaching a decision. All applicants are kept fully informed of outcomes.
What we expect from the researchers we fund
Researchers funded by CGDS are required to disseminate their results through peer-reviewed
high‐impact journals. In addition, any research outcome or product should be made freely
available to other researchers.
We expect researchers to publically acknowledge our funding and the contribution it has made to
further their work and careers and to work with us to produce high-quality research summaries
and news items for our lay membership.
To understand the long-term impact of the research we fund we may contact researchers
periodically after the grant has finished.
How we raise our funds for research
The CGDS receives a large proportion of income through the Jeans for Genes Day campaign. The
CGDS owns the trademarks for Genetic Disorders UK (GDUK) and Jeans for Genes. CGDS charges
GDUK an annual license fee for the use of the GDUK and Jeans for Genes trademarks, which
provides the Society with the income to fund the charity’s activities. CGDS Trustees decide on the
budget allocation for the support functions and research funding activities of the charity.