YEARLY SUMMARY PATIENT INFORMATION
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1 From: / / To: / / For RRC use only Form : Status: Person completing form: (please print) REFERRING PHYSICIAN Name: Institution Name: Institution Address: City/Village: State/Province: Zip/Postal Code: Telephone Number: ( ) ( ) Fax Number: ( ) ( ) Address PATIENT DETAILS Complete only if change from last information provided. Patient: Address: City/Village: State/Province: Zip/Postal Code: Country: Telephone Number: ( )( ) For RRC Sent: Data Review: use only Received: Entered: Clinical Review: Verified: 30Jun
2 From: / / To / / EXAMINATIONS AND SIGNIFICANT NON-INFECTIOUS CLINICAL EVENTS Bone marrow evaluation done AML/MDS Cytogenetics evaluation done Cytogenetic abnormality detected Bone density evaluation done Abnormal bone density/osteopenia/osteoporosis In vitro research testing done Glomerulonephritis Vasculitis Arthritis Splenectomy Date: Other significant non-infectious events including all hospitalizations (specify): Height assessed: or Date: cm in Weight assessed: or Date: kg lbs CBCs done during this time period (Please attach all reports) Patient pregnant during this time period or currently pregnant Patient died during this time period Date: Cause of death: _ 16Jan
3 From: / / To / / Mouth ulcers Skin abscesses SIGNIFICANT INFECTIOUS EPISODES 1-3 per 4-12 per > 12 per Year, Frequency ne Year Year Continuous Unknown Other significant infections (specify): IV Antibiotics administered ( if yes) TREATMENT Cytokine (growth factor, e.g., G-CSF) treatment during this time period Type: G-CSF GM-CSF EPO Other (specify): Current cytokine dose: Units*: Freq**: Brand Name: Units*: Freq**: Brand Name: Indicate typical dose range for this year: Was cytokine discontinued during this time period: *Units **Freq If yes, date discontinued: mcg qd Reason: Ineffective Pt. chose to withdraw mcg/kg bid Toxicity Neutrophil recovery ml qod n-compliant qtd Other, specify qwk Other treatments for neutropenia: Steroids Gammaglobulin Other, specify Bone marrow transplant BONE MARROW CELL BANK Next bone marrow exam planned? If yes: / mo yr Please plan to send bone marrow sample to cell bank every year. 30Jun
4 Patient Id Number / / / Patient Initials REPORT GLYCOGENOSIS TYPE IB BIRTH TYPE Single Identical twin Fraternal twin, gender: same different Other multiple: GSD-IB RELATED SYMPTOMS Unknown Asymptomatic Low birth weight Skeletal abnormalities : Muscular hypotonia Xanthomas or lipomas Malignant adenoma Epilepsy Dental problems : Growth retardation Failure to thrive Hematological abnormalities : Malignancy : Other dysfunction : Supplementary feeding : tube feeding percutaneous endoscopic gastrostomy (PEG) SERUM PARAMETERS C-Gluc/GD/e Lactate Alanine Creatinine Urea Cholesterol Triglycerides µmol/l Date [DD/MON/YY]: µmol/l Date [DD/MON/YY]: RADIOLOGY RESULTS (please attach reports) Pancreas CT U/S rmal Abnormal: Liver CT U/S rmal Abnormal: Ribs rmal Abnormal: Long bones rmal Abnormal: Dental radiology rmal Abnormal:
5 PSYCHOLOGY Overall functioning rmal Concerns: Concentration power rmal Concerns: Mental development rmal Concerns: General behaviour rmal Concerns: Social competence rmal Concerns: Other issues Genotype t tested Tested GENOTYPE (if not reported previously) Mutation of G6P-Transporter Gene:
REGISTRATION PATIENT DETAILS
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