Kein Folientitel

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The Pediatric and AdultRegistry on Chronic ITP
(PARC-ITP) www.unibas.ch/itpbasel - Update and
new proposals -
Thomas KühneUniversity Childrens Hospital
Basel, Switzerland
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(No Transcript)
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Causes of acquired thrombocytopenia
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Drugs associated with ITP
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Platelet Receptors
Nurden, Thromb Haemost 1999
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ICISIntercontinental Childhood ITP Study Group
www.unibas.ch/itpbasel
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PARC-ITP Study www.unibas.ch/itpbasel
Intercontinental Childhood ITP Study Group ICIS

• Aims of the study

• Primary objectives
• To establish a database on children and adults
  with ITP (demografics)
• To analyse the heterogeneity of ITP
• To identify new patient selection criteria for
  future studies
• Secondary objectives
• To study the natural history of ITP
• To validate diagnosis

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Intercontinental Childhood ITP Study Group ICIS
Secondary ITP/other disorders
Children and Adults with newly diagnosed ITP
Long-term follow-up, yearly
6 months
Remission (plt ct gt 150 x 109/L)

• Forms Initial form (at initial diagnosis)
• Follow-up form (6 months)
• Follow-up form (12 months, from then on yearly)

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PARC-ITP Study www.unibas.ch/itpbasel
Intercontinental Childhood ITP Study Group ICIS
Eligibility

• Children from the age of 2 months with newly
  diagnosed ITP
• Adults with newly diagnosed ITP
• Informed consent by patient
• Approval by local IRB or Ethics Committee

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PARC-ITP Study www.unibas.ch/itpbasel
Intercontinental Childhood ITP Study Group ICIS

• Procedure

• Data collection at the Central Data Office in
  Basel, Switzerland
• Anonymous registration (UPN)

• Publication
• Interim analysis (1000 eligible patients, or
  after lt 5 years)
• Writing committee (members of ICIS, EHA, SAH)
• Core committee (publication in Journals)

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PARC-ITP Study www.unibas.ch/itpbasel
Intercontinental Childhood ITP Study Group ICIS
Pediatric and Adult Intercontinental Registry on
Chronic ITP
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PARC-ITP Study www.unibas.ch/itpbasel
Intercontinental Childhood ITP Study Group ICIS
Trees in the PARC
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PARC-ITP Study www.unibas.ch/itpbasel
Intercontinental Childhood ITP Study Group ICIS

• Statusreport as of May 5, 2005

Countries 17 Institutions 34 Investigators 38 I
nvestigators with Patients 23 Investigators with
IRB/Ethics approval 33 Patients 128 Patients lt
16 years 114 Patients gt 16 years 14 Patients
with Splenecotomy 0 Patients dead 0 Initial
Forms 128 6-mts Forms 25 12-mts Forms 0 24-mts
Forms 0
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PARC-ITP Study Genetics www.unibas.ch/itpbasel
Intercontinental Childhood ITP Study Group ICIS
Hypothesis Children and adults with ITP share a
complex genetic predisposition to develop the
disease, and certain modifier genes influence the
course of the disease, e.g., acute and chronic
ITP, as well as response to treatment
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PARC-ITP Study Genetics www.unibas.ch/itpbasel
Intercontinental Childhood ITP Study Group ICIS

• Methods
• DNA samples
• Single nucleotide polymorphisms
• Area of interest
• immune response
• hemostasis

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PARC-ITP Study Genetics www.unibas.ch/itpbasel
Intercontinental Childhood ITP Study Group ICIS

• Aims
• Identification of new genomic regions
  predisposing to or influencing the course of ITP
• Analysis of genotype in a wide range of immune
  response genes
• Detection of genomic differences among various
  cohorts

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The Pediatric and Adult Registry on Chronic ITP
(PARC-ITP) www.unibas.ch/itpbasel

• Intercontinental Childhood ITP Study Group

• European Hematology Association

• Sociedad Argentina de Hematologia (SAH)

• International Society on Thrombosis and
  Haemostasis (ISTH)