Initials:.. Number of patient in the registry:... Date of visit:.. Gender (genetic): female / male
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1 1. Patient personal details Institute code: Physician code: Initials:.. Number of patient in the registry:... Date of visit:.. Gender (genetic): female / male 2. Changes in acromegaly-specific medical history Any significant changes or new significant symptoms of acromegaly: - If yes, please specify: - Swelling of extremities [ * ] [1] No significant changes / Symptom is over / Improvement / / No data Improvement / worsening degree: - mild / moderate / considerable [2] New significant symptom: mild / moderate / severe - Excessive sweating and body odor [ * ] [1] No significant changes / Symptom is over / Improvement / / No data Improvement / worsening degree: - mild / moderate / considerable [2] New significant symptom: mild / moderate / severe - Joint pain [ * ] [1] No significant changes / Symptom is over / Improvement / / No data Improvement / worsening degree: - mild / moderate / considerable [2] New significant symptom: mild / moderate / severe - Fatigue and muscle weakness [ * ] If yes, [[1] No significant changes / Symptom is over / Improvement / / No data
2 Improvement / worsening degree: - mild / moderate / considerable [2] New significant symptom: mild / moderate / severe - Headaches [ * ] [1] No significant changes / Symptom is over / Improvement / / No data Improvement / worsening degree: - mild / moderate / considerable [2] New significant symptom: mild / moderate / severe ( [ * ] mild: 1 point, moderate: 2 point, severe: 3 point) Acromegaly severity score (0-15 point):. - Enlarged hands [1] [2] / Increase of shoe size [1] [2] / Coarsened, enlarged facial features [1] [2] / Coarse, oily, thickened skin [1] [2] / Small outgrowths of skin tissue (skin tags) [1] [2] / A deepened, husky voice [1] [2] / Severe snoring [1] [2] / Impaired vision [1] [2] / Visual field defects [1] [2] / Enlarged tongue [1] [2] / limited joint mobility [1] [2] / Increased chest size (barrel chest) [1] [2] / Increased distance between teeth [1] [2] / Other [1] [2] :.. [1] No significant changes / Symptom is over / Improvement / / No data [2] New significant symptom Any significant changes in other symptoms or new significant symptoms: - If yes, please specify: Decreased body and facial hair [1] [2] / Thinning hair [1] [2] / Erectile dysfunction [1] [2] / Gynecomastia [1] [2] / Loss of interest in sexual activity [1] [2] / Infertility [1] [2] / Irregular menstrual periods (oligomenorrhea) or no menstrual periods (amenorrhea) [1] [2] / Galactorrhea [1] [2] / Painful intercourse [1] [2] / Acne [1] [2] / Hirsutism [1] [2] / Lightheadedness [1] [2] / Fatigue [1] [2] / Body aches [1] [2] / Low blood pressure [1] [2] / Unexplained weight loss [1] [2] / Weight gain [1] [2] / Increased sensitivity to cold [1] [2] / Constipation [1] [2] / Dry skin [1] [2] / Puffy face [1] [2] / Hoarseness [1] [2] / Muscle weakness [1] [2] / Decrease in muscle mass [1] [2] / Muscle aches, tenderness and stiffness [1] [2] / Depression [1] [2] / Impaired memory [1] [2] / Difficulty in focusing attention [1] [2] / Other [1] [2] :..
3 [1] No significant changes / Symptom is over / Improvement / / No data [2] New significant symptom Laboratory results Any significant change in the laboratory results If yes: Date of investigation: Hormones: yes / no - IGF-1: - unit:. ng/ml calculator. nmol/l - Upper limit of normal (ULN):. Upper limit of normal ratio (ULNR):. - GH (baseline, 0 min.): - unit:. ng/ml calculator mu/l - GH (lowest value during an OGTT): - unit:. ng/ml calculator. mu/l - Prolactin: - unit:. ng/ml calculator. mu/l - TSH: - unit:. mu/l - FT4: - unit:. pmol/l calculator. ng/dl - ACTH: - unit:. pmol/l calculator. pg/ml
4 - Cortisol: - unit:. nmol/l calculator. μg/dl - FSH: - LH: - unit:. U/L - unit:. U/L - Testosterone : - unit:. nmol/l calculator. ng/ml - Estradiol : - unit:. pmol/l calculator. pg/ml Biochemical control of acromegaly: - controlled / partially controlled / uncontrolled / no data Findings of pituitary insufficiency: Hypadrenia - No significant changes / Finding is over / Improvement / / No data or - New significant finding Hypothyroidism - No significant changes / Finding is over / Improvement / / No data or - New significant finding
5 Hypogonadism - No significant changes / Finding is over / Improvement / / No data or - New significant finding Diabetes insipidus - No significant changes / Finding is over / Improvement / / No data or - New significant finding - If new significant finding: Excretion of more than 4 liter urine: New radiological image: If yes: Date of imaging: Imaging modality: CT / MRI Maximal diameters of the tumor (3D if assessed):. [mm] Size category: micro /macro / giant / not visualized /empty sella / no data. Sinusoidal invasion: yes / no / not known / no data. Optic chiasm: no contact / contact / displaced / no data. Ectopic: yes / no / not known. Change from the previous investigation: no change / decreased / increased / no data. 3. Any significant changes in details from the medical history
6 Dysglycemia: - New significant dysglycemia - Since when: - Controlled by treatment: Lipid metabolism disorder: - New significant disorder of lipid metabolism: - Since when: - Controlled by treatment: Hypertension: - Newly discovered hypertension - Since when: - Controlled by treatment: Cardiomyopathy: - Any significant changes in the cardiomyopathy - Changes in the ECG: - If yes: Any significant changes in AV conduction abnormality Any significant changes in rhythm abnormality Any significant changes in left ventricular hypertrophy
7 Any significant changes in bundle branch block Any significant changes in ischemic lesion Any significant changes in QTc prolongation Any significant changes in other:. - Any significant changes in echocardiography: If yes: - date of examination: EF [%]:. - Any significant changes in degree of left ventricular hypertrophy: - Heart failure: / No data. Highest NYHA grade (I-IV):. - New cardiomyopathy - Since when:.. - ECG abnormality: - If yes: AV conduction abnormality Rhythm abnormality Left ventricular hypertrophy Bundle branch block Ischemic lesion QTc prolongation Other:. - Echocardiography:
8 If yes: - date of examination: EF [%]:. - Degree of left ventricular hypertrophy: no / mild /moderate /severe. - Heart failure: yes / no If yes: - Since when:.. - Required hospitalization: yes / no - Highest NYHA grade (I-IV): Sleep apnoe: - Any new sleep apnoe: - When was discovered:.. - Controlled by treatment: yes / no / not applicable / nincs adat Stroke: - Any new stroke: - When was discovered: Renal failure: - No significant changes / Finding is over / Improvement / - Lowest egfr [ml/min/1.73m 2 ]:. - Any new significant renal failure: - Since when:.. - Lowest egfr [ml/min/1.73m 2 ]:. - Controlled by treatment: yes / no / not applicable Malignant tumor - No significant changes / Disease is over / Improvement / / No data
9 - Any new malignant tumor: If yes, type: Brain tumor / Thyroid gland tumor / Gastrointestinal tumor / Hematological tumor / Tumor of the skin and-or soft tissue / Urological tumor / Gynecological tumor / Breast cancer / Other (please describe):.. When was discovered (year):.. Colonic polyp(s): - Any new colonic polyp(s): yes / no /not known / no data - When was discovered:.. Other, benign tumor: - Any new other, benign tumor: - When was discovered:.. Carpal tunnel syndrome: - Any new carpal tunnel syndrome: - Since when:.. Bone disorder: - No significant changes / Disorder is over / Improvement / / No data - New significant changes in bone disorder: - Since when:..
10 Fracture(s): - DEXA: yes /no / no data lumbal / femoral / other. - Other:. T-score:. Z-score:. - No significant changes / Disorder is over / Improvement / / No data - Any new fracture(s): - When happened:.. - Region: vertebral / hip / wrist / other. - Other:.. Neuro-psychiatric disorder(s): - No significant changes / Disorder is over / Improvement / / No data - Any new significant neuro-psychiatric disorder(s) - When was diagnosed: - Type: Depression / Anxiety disorder / Chronic pain syndrome / Cognitive problems / Other (please describe):. Other disorder(s): - No significant changes / Disorder is over / Improvement / / No data - Any new significant other disorder(s): - What disorder:.. - Since when:.. Non-pituitary surgery: Pregnancy: - Recent (non-pituitary) surgery: - What was: - When:..
11 - Any new pregnancy: - When:.. - Delivery: yes / no Alcohol consumption: - No significant changes / Stopped consuming alcohol / Improvement / / No data - Any significant new alcohol consumption: - Frequency: not available / occasionally / monthly / weekly / daily. - Amount (per occasion):. - For how many years?. Smoking habits: - No significant changes / stopped smoking / Improvement / / No data Drug abuse: Any significant new smoking habits: - Amount (cigarettes/day):. - Since when:. - No significant changes / stopped smoking / Improvement / / No data Any new significant drug abuse: - Type of drug:.. - Amount: For how many years and/or month if available:. 4. Any significant changes in family history If yes: Tumorous disease in family history: - Pituitary tumor: yes / no yes / no / not available
12 daughter / son / other (please describe):.. - Brain tumor: yes / no - Thyroid gland tumor: yes / no - Gastrointestinal tumor: yes / no - Hematological tumor: yes / no - Skin/ soft tissue tumor: yes / no - Urological tumor: yes / no - Gynecological tumor: yes / no
13 - Breast cancer: yes / no - Other:.. - Relationship to patient*: New diseases: if yes: please list/describe them:.. 5. Any significant changes in treatment of acromegaly Any change in the therapy: Any new surgical therapy: yes / no FORM C - Surgical therapy Any significant changes in the medical therapy: yes / no FORM D - Medical therapy Any new radiotherapy: yes / no FORM E - Radiotherapy
14 6. Any significant changes in relevant, not acromegaly medications taken regularly: If yes: Medication: Active substance:... Dose:. g or. mg or. IU How many times per day (e.g. 3):. Method of administration: oral / nasal / transdermal / subcutaneous / intramuscular / intravenous/ other. - other:.. Other notes: Outcome Not available for endocrine care/ Regular follow-up / Death * / No data. * Date of death:
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