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
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] :..
[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
- 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
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
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
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:
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
- 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:..
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:..
- 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
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
- 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
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:... 7. Outcome Not available for endocrine care/ Regular follow-up / Death * / No data. * Date of death:........