| Factor XI |
| Although factor XI deficiency is a rare bleeding disorder with
only 500 affected individuals identified nationally in the United Kingdom, it is
very common in Ashkenazi Jewish people. We really should be providing a
screening programme for our local high-risk population in North London - and
certainly for those families where an abnormality has already been found. Not
only would this provide better care for affected individuals, but in the process
of screening, blood samples could be stored for genetic analyses and studies of
the haemostatic process in relation to factor XI. |
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 The overriding
question in this disorder is "Who has the disorder and why do some
people bleed and others do not at the same level of factor XI ?" If it
were possible to identify potential bleeders, we would have a predictor, rather
than having to rely on previous challenge to the haemostatic mechanism. |
In order to achieve this, we need more resource in particular,
staff. We would need:
- A research physician (£30,000 per annum), whose task
would be to see individuals for screening, take a bleeding history, establish a
bank of stored specimens and then provide individuals who had been identified
with factor XI deficiency with advice about the management of the condition and
register them as having a deficiency;
- A medical laboratory scientist (£20,000 per annum), in
order to perform the laboratory assays of factor XI and to do the tests of the
haemostatic mechanism;
- A nurse (£20.000 per annum) who could co-ordinate and
manage the screening of patients
We believe that by concentrating on this task over a period of two
years, we could achieve a large screening of the local population and go some
way to establishing the underlying pathology of this disorder, in particular, in
order to identify factors which could help us predict those individuals who are
likely to bleed when challenged. |
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 Thus, we would like
to establish a fund in order to raise £100,000 per annum for two years to
achieve this goal. Such a fundraising activity could be managed and administered
through the Katharine Dormandy irust. We would like you to join with us to
achieve these objectives.
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| Haemappeal is the
Haemophilia Cure Appeal of the Katharine Dormandy Trust for haemophilia and
allied disorders based at the Royal Fre Hospital in London UK |
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