Letter of Invite to participants
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United Kingdom Paediatric Chronic ITP Registry
Invitation to Parents.
We are writing to invite you to participate in an important, prospective national study
of childhood immune thrombocytopenic purpura (ITP). A National Registry has been
established for children aged between two months and sixteen years diagnosed in the
last 12 months with acute and chronic ITP and will form part of an international
registry for ITP (PARC, Paediatric and Adult intercontinental Registry on Chronic
ITP).
Immune thrombocytopenic purpura (ITP) is a condition characterised by a low
platelet count due to destruction of platelets in the circulation by antibodies.
Individuals with a low platelet count are at a higher risk of bleeding and bruising;
however in ITP the risk and severity of bleeding may be independent of the severity
of the low platelet count. The majority of children and some adults will spontaneously
recover completely from their ITP without treatment. However, individuals who have
a persistent low platelet count after six months from initial diagnosis (Chronic ITP)
may be at a higher risk of serious bleeding and may require more aggressive treatment
such as surgical removal of the spleen (splenectomy).
The research will establish a UK database, which is linked to the international registry
initiated by the intercontinental ITP study group (ICIS). The study is called PARC,
Paediatric and Adult intercontinental Registry on Chronic ITP. Individuals with ITP
will be followed over several years enabling us to obtain a systematic analysis of
remission rate, complications and need for therapy.
As well as giving us more information on the natural course of chronic ITP the
database is also intended to identify individuals whom may teach us more about ITP.
The majority of children with ITP are treated at their local hospital. The local medical
team identify participants, provide more detailed information sheets and facilitate
consent. Registration of a patient will trigger a data collection form being sent
electronically to the registering clinician. Data can then be returned electronically and
UK Paediatric Chronic ITP Registry (version 1) dated 08.02.2006
Letter of Invite to participants
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stored in an anonymised form on an existing, secure national database. Follow up
information will be requested six months after registration: no further information will
then be collected on those children whose ITP has resolved whereas data will
continue to be collected at yearly intervals on children with ongoing chronic ITP.
We hope that you will agree to participate in this study which has COREC approval
and is supported by the ITP Support Group. You will be aware of the lack of
consensus which exists about the management of acute and chronic ITP, and of the
incomplete information which exists on the outcome of these disorders in childhood.
The establishment of this Registry will provide much needed data which will be used
to inform clinicians and families on prognosis, risk and optimal treatment strategies
for paediatric ITP.
Further information about this study can be obtained from any of the study coordinators listed on the following page.
Thank you for your interest.
Yours sincerely
Dr John Grainger
Chairman
UK Paediatric ITP Working Party
The following organisations have written in support of this registry:
The Paediatric subcommittee of British Society for Haematology
The ITP Support association
UK Paediatric Chronic ITP Registry (version 1) dated 08.02.2006
Letter of Invite to participants
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Dr John Grainger
Consultant Paediatric Haematologist
Royal Manchester Children’s Hospital,
Pendlebury,
Manchester M27 4HA
Tel. 0161 922 2245
Fax 0161 922 2545
Email john.grainger@cmmc.nhs.uk
Dr Paula Bolton-Maggs
Consultant Haematologist
Manchester Royal Infirmary
Oxford Rd
Manchester M13 9WL
Tel 0161 276 4811
Fax 0161 276 8085
Email paula.bolton-maggs@manchester.ac.uk
Dr Sarah Ball
Reader/Hon Consultant in Paediatric
Haematology
St George's University of London
Cranmer Terrace
London SW17 0RE
Tel 0208 725 3921
Fax 0208 725 0636
Email sball@sgul.ac.uk
Dr Mike Williams
Consultant Paediatric Haematologist
Birmingham Children's Hospital
Steelhouse Lane
Birmingham B4 6NH
Tel. 0121 333 9843
Fax 0121 333 9841
Email mike.williams@bch.nhs.uk
Dr Mike Richards
Consultant Paediatric Haematologist,
Children's Day Hospital,
St James's University Hospital,
Leeds LS9 7TF
Tel 0113 2066295
Fax 0113 2470248
Email Michael.Richards@leedsth.nhs.uk
UK Paediatric Chronic ITP Registry (version 1) dated 08.02.2006