Research for Families
UK Fanconi Anaemia Research
Fanconi Hope is pleased to announce that in collaboration with the US Fanconi Anemia Research Fund we have provided a grant of £30,000 for the first UK research programme relating to the use of stem cell technology in conjunction with gene therapy to cure Fanconi Anaemia; ‘Using iPSC technology to understand early haematopoietic development in Fanconi Anaemia patients’
Fanconi Hope’s research grant of £30,000 is now funding the first phase of the work, and we have set ourselves a target of raising a further £100,000 for the remaining phases. Further information can be found on our Fanconi Hope Funded Research page
We have identified a list of UK Researchers who have produced research relevant or relating to Fanconi Anaemia and invited them to become part of the UK Fanconi Anaemia Research Network. Abstracts (or summaries) of papers that they have published in the medical literature can be found by going to http://www.ncbi.nlm.nih.gov/pubmed/advanced and performing an author search.
Further research information can be found in the Clinicians section of our website.
Relevant research programmes you can currently participate in.
The following is a list of research programmes that as families affected by Fanconi Anaemia you can participate in directly:
1) 17 May 09: Would you like to help develop a new questionnaire to measure outcomes from clinical genetics services?
Volunteers need for research.
My name is Marion McAllister and I am carrying out research to develop new ways of measuring how people from families affected by genetic diseases or conditions may benefit from seeing a geneticist / genetic counsellor or attending a genetics clinic. As part of this work, I am developing a questionnaire that will examine patients’ thoughts, feelings and attitudes about the family disease or condition. You do not need to have used a clinical genetics service yourself to help with this research.
If you would like to help please complete the questionnaire on her website
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2) 17 May 09: Invitation to participate in research project looking at the role of the patient’s family, especially when important decisions about testing, diagnosis, treatment have to be made.
My name is Dr Roy Gilbar and I am a research fellow in Queen Mary College University of London. I am starting a research project that is funded by the Nuffield Foundation looking at the role of the patient’s family, especially when important decisions about testing, diagnosis, treatment and the like have to be made.
I would like to conduct interviews with doctors, nurses, patients and relatives where a serious or life changing decision has to be made. The interviews wil take up to an hour and will be conducted at your home or at any other place of your choosing.
This research has been approved by an NHS ethics committee (ref: 09/H0502/9), so your confidentiality, privacy and autonomy wil always be protected at all times.
If you have ben diagnosed with a serious illness, such as cancer, heart disease or Alzheier’s disease, in the last 6 to 9 months and would like to share your experience and views, or recieve more information about this project please vontact me:
Dr Roy Gilbar, The school of Law, Queen Mary College, London, Mile End Road, London E1 4NS.
Mobile: 07792-323386, Landline 0208 436 0186
