UKITP INITAL INFORMATION SHEET (2.4)

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UKITP INITAL INFORMATION SHEET (2.4) Barts Health NHS Trust The Royal London Hospital Pathology and Pharmacy Building 80 Newark Street, London E1 2ES Centre for Haematology Institute of and Molecular Science Queen Mary s University London Dr Daniel Hart, Chief Investigator Dr Drew Provan, Collaborator Initial Information Sheet at Registration Tel: +44 (0) 207 377 7000, Ext 61114 Fax: +44 (0) 203 246 0230 UK Adult Immune Thrombocytopenic Purpura (ITP) Registry Email: uk-itp.registryteam@nhs.net Patient Information: Surname of Birth Forename(s) Gender Registration on UKITP Registry Ethnicity NHS Number Address At registration At diagnosis (if available) Haematologist and GP Information: At registration At diagnosis (if different) Consultant Name Department Hospital/Centre Name Telephone/Fax / / At registration GP s name GP's practice name Telephone/Fax / Information about ITP diagnosis, referral and follow up. ITP diagnosis When was the last ITP-related clinic visit for this patient? 1

Was the patient referred to your centre for ITP care? Yes No Speciality of referrer Address of referrer Anthropometric measurements and lifestyle Patient Weight (Time of Diagnosis) kg Height cm BMI Type Amount Tobacco Use Alcohol Consumption Bleeding Events Location Occurrence Severity Cutaneous Bleeds Yes No Bleeds from the Oral Cavity Yes No Epistaxis Yes No Uterine Bleeds Yes No Haematuria Yes No Gastrointestinal Bleeds Yes No Intracranial Haemorrhage Yes No Muscle Bleeds Yes No Joint Bleeds Yes No Subconjunctival Bleeds Yes No Retinal Bleeds Yes No ITP-related Treatments Treatment Administered Dose (maximum) Course (s) Prednisolone Yes No IVIg Yes No Splenectomy Yes No laparoscopic or open technique (select) Anti-D Yes No Methylprednisolone Yes No Dexamethasone Yes No Danazol Yes No Dapsone Yes No Azathioprine Yes No Cyclophosphamide Yes No Vinca Alkaloids Yes No 2

Mycophenolate Yes No Eltrombopag Yes No Romiplostim Yes No Plasmapheresis Yes No Protein A Immunoadsortion Yes No Interferon Yes No Cyclosporine Yes No Rituximab Yes No Platelet Transfusion Yes No Red Blood Cell Transfusion Yes No Other blood product transfusion Yes No H. pylori Treatment Yes No Vitamin C Supplements Yes No Other Yes No Co-therapies started Or First Record Available Anti-lipid therapy Yes No Antihypertensive therapy Yes No Drug name Dose Course Anticoagulation therapy Yes No Thrombolysis therapy Yes No Antifibrinolytic therapy Yes No Co-Morbid Conditions at presentation Condition Occurrence Diagnosis Cataracts Yes No Osteoarthritis Yes No Type I Diabetes Yes No Type II Diabetes Yes No Hypertension Yes No Peptic Ulcers Yes No H. pylori Infection Yes No Renal Failure or Impairment Yes No Chronic Liver Disease Yes No Hypercholesterolemia Yes No Myocardial Infarction Yes No Unstable Angina Yes No Revascularisation procedure Yes No Sudden Cardiac Death Yes No Ischaemic Stroke Yes No Transient Ischaemic Attack Yes No Deep Vein Thrombosis Yes No Pulmonary Embolism Yes No 3

Splenomegaly Yes No Thyroid Disease Yes No Depression/Anxiety Yes No Miscarriage Yes No Cushing s Syndrome Yes No Candida Infection Yes No Pneumonia Yes No Other Autoimmune Disease Yes No Type Haematological Malignancy Yes No Type/Site Solid Tumour/Malignancy Yes No Site Photoxicity Yes No Family history Cancer Yes No Site: Ischemic Heart Disease Yes No Type: Stroke Yes No Ischaemic or Haemorrhagic or Not Known ITP Yes No Other autoimmune disease Yes No Type: Any other relevant family history Yes No Specify Biochemical Fields (Levels at Diagnosis) Level Alanine Transaminase (ALT) Aspartate Transaminase (AST) Alkaline Phosphatase (ALP) Bilirubin Haematological Fields (Levels at Diagnosis) Platelet Count Count Haemoglobin Count Count White Blood Cells (Level at Diagnosis) Count Neutrophils Count Red Blood Cells (Level at Diagnosis) Mean Platelet Volume (MPV) [Volume at Diagnosis] 4

Blood Group (A, B, AB or O; Rh Positive/Negative) Marrow Aspirate Yes No Conclusion Trephine Biopsy Yes No Conclusion Direct Agglutination Test (DAT) (Level at Diagnosis) Immunological Fields (Levels at Diagnosis) Immunoglobulin IgG IgM IgA Anti-Nuclear Antibodies Coagulatory Fields (Levels at Diagnosis) Prothrombin Time (PT) Activated Partial Prothrombin Time (APPT) Lupus Anticoagulant (LA) Anticardiolipin Antibody (acl) Reticulocyte Percentage Level Miscellaneous Indium Scanning t80%/t30 minute spleen/liver ratio Other Comments/notes 5