SCD Registry Form

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Country Organization is Based *

Country Data Was Collected *

SCD Phenotypes being collected *

Data collected Start Date *

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Data collected End Date (if it exists)

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Frequency of collection (eg: Every 6 months) *

Size of SCD cohort *

Size of Controls

Age ranges of cohort (Youngest – Oldest in years) *

Website Link to your dataset

Key publications around your dataset (links to pubmed)

Research area you might be interested in collaborating with other SCD researchers?

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Abdominal Vaso-Occlusive Crisis
Abnormal Echocardiogram
Abnormal Glucose Homeostasis
Abnormal Hemoglobin Concentration
Abnormal Lipid Homeostasis
Abnormal Red Blood Cell Deformability
Abnormal Thrombosis
Abnormality of the Adrenal Glands
Abnormality of the Cerebrum
Abnormality of the Parathyroid Gland
Abnormality of the Thyroid Gland
Absence of Alpha Globin Synthesis with Gamma Globin Synthesis
Absent Hemoglobin A
Acne
Acute Chest Syndrome
Acute Cholecystitis
Acute Complications of Sickle Cell Disease
Acute Hepatic Sequestration
Acute Kidney Injury
Acute Non-Specific Wheezing Episode
Acute Pancreatitis
Acute Severe Headache
Acute Sickle Cell Crisis
Acute Splenic Sequestration Crisis
Acute Symptomatic Seizure
Acute Tubular Necrosis
Acutely Severe Anemia
Adrenal Insufficiency
Adult Hemoglobin
African Iron Overload
Agenesis of Corpus Callosum
Albinism
Albuminuria
Alpha Thalassemia
Alpha Thalassemia Silent Carrier
Alpha Thalassemia Trait
Anemia
Angina
Angioid Streaks
Anxiety
Aplastic Crisis
Arrhythmia
Arteriovenous Malformation
Arthralgia
Arthritis
Ascending Cholangitis
Ascorbic Acid Deficiency
Asthma
Ataxia
Atopic Dermatitis
Atrophic Brain
Attention Deficit Hyperactivity Disorder
Avascular necrosis
Avascular necrosis of the femoral head
Avascular necrosis of the humeral head
Avitaminosis
Azoospermia
Azotaemia
Back Pain
Behavioral Abnormality
Beta Minus Thalassemia
Beta Thalassemia
Beta Thalassemia Intermedia
Beta Thalassemia Major
Beta Thalassemia Trait
Beta Zero Thalassemia
Biconcave Vertebral Bodies
Black Sunburst Lesion
Blindness
Bone Fragility
Bone Marrow Hyperplasia
Bone Pain
Bone Sclerosis
Bradykinesia
Brain Abscess
Breakthrough Pain
Bronchiolitis
Caesarian Section
Cancer
Cardiac Failure
Cardiomegaly
Central retinal artery occlusion
Central Sleep Apnea
Cerebellar Hemorrhage
Cerebral Aneurysm
Cerebral Atrophy
Cerebral Edema
Cerebral Hemorrhage
Cerebral Vasculitis
Cerebral Venous Sinus Thrombosis
Cerebrospinal Fluid Pleocytosis
Cervical Cord Compression
Chest Pain
Cholecystitis
Cholelithiasis
Chronic Anemia
Chronic Arthritis
Chronic Cholecystitis
Chronic Complications of Sickle Cell Disease
Chronic Hemolytic Anemia
Chronic Hypersplenism
Chronic Kidney Disease
Chronic Kidney Injury
Chronic Neuropathic Pain
Chronic Pain
Chronic Pain in a Specific Tissue or Organ
Chronic Pain often of Unclear Etiology
Chronic Phenotype
Chronic Restrictive Lung Disease
Chronic Sickle Cell Pain
Cirrhosis
Cluster Headache
Coma
Confusion
Conjunctival Comma Sign
Constipation
Cough
Crystallisation of Hemoglobin
Crystallised Hemoglobin
Cutaneous Hyperpigmentation
Cyanosis
Decreased Circulating LDL Cholesterol Level
Delayed Puberty
Delta Beta Thalassaemia
Delta Thalassaemia
Dementia
Depression
Developmental Delay
Diabetes Insipidus
Diabetes Mellitus
Diabetic Ketoacidosis
Diarrhea
Diuresis
Dysarthria
Dyslipidemia
Easy Bruisability
Ecchymosis
Eclampsia
Ectopic Pregnancy
Edema
Elevated Hepatic Iron Concentration
Embryonic Hemoglobin
EMG Abnormality
Encephalopathy
End Stage Kidney Disease
Endometriosis
Endometritis
Enuresis
Epilepsy
Executive Dysfunction
Exercise-Induced Rhabdomyolysis
Extrapyramidal Symptoms
Facial Dysmorphisms
Facial Nerve Palsy
Facial Paralysis
Failure to Thrive
Fatigue
Fetal Hemoglobin
Fever
Flexion Contracture
Focal Dystonia
Focal Segmental Glomerulosclerosis
Folate Deficiency
Frontal Bossing
Functional Hyposplenism
Gallbladder Empyema
Gingival Bleeding
Girdle Syndrome
Glaucoma (Secondary to Presence of Blood in the Anterior Chamber of the Eye)
Glomerular Hypertrophy
Glomerulonephritis
Glomerulopathy
Glomerulosclerosis
Growth Delay
Growth Hormone Deficiency
Hematuria
Hemiparesis
Hemoglobin A2
Hemoglobin Barts
Hemoglobin Barts Hydrops Fetalis
Hemoglobin C
Hemoglobin C Disease
Hemoglobin C Trait
Hemoglobin C-Harlem
Hemoglobin C-Harlem Disease
Hemoglobin C-Harlem Trait
Hemoglobin D
Hemoglobin D Disease
Hemoglobin D Trait
Hemoglobin D-Ibadan
Hemoglobin D-Punjab
Hemoglobin D-Punjab Trait
Hemoglobin E
Hemoglobin E Disease
Hemoglobin E Trait
Hemoglobin H
Hemoglobin H Disease
Hemoglobin Jamaica Plain
Hemoglobin Lepore Boston
Hemoglobin Lepore Boston Disease
Hemoglobin Lepore Syndrome
Hemoglobin Lepore Trait
Hemoglobin M
Hemoglobin M Disease
Hemoglobin M Trait
Hemoglobin O-Arab
Hemoglobin O-Arab Disease
Hemoglobin O-Arab Trait
Hemoglobin Quebec Chori
Hemoglobin S
Hemoglobin S-Antilles
Hemoglobin S-Oman
Hemoglobin S-South End
Hemoglobinuria
Hemolysis
Hemolytic anemia
Hemolytic Crisis
Hepatic Fibrosis
Hepatic Vein Thrombosis
Hepatomegaly
Hepatosplenomegaly
Hereditary Hemochromatosis
Hereditary Persistence of Fetal Hemoglobin
High Level Albuminuria
High Reticulocyte Count
Hydrops Fetalis
Hyperbilirubinemia
Hypergonadotropic Hypogonadism
Hyper-Haemolytic Crisis
Hyperhemolysis
Hyperinsulinemia
Hyperkalemia
Hyperkeratosis
Hyperlipidemia
Hyperostosis
Hyperparathyroidism
Hyperpigmentation
Hypersplenism
Hypertension
Hyperthyroidism
Hyperuricemia
Hyperviscosity
Hyphema
Hypochromic Anemia
Hypoglycemia
Hypogonadotrophic Hypogonadism
Hypoparathyroidism
Hypopigmentation
Hyporeflexia
Hyposthenuria
Hypothyroidism
Hypovolemia
Hypoxemia
Hypoxia
Imbalanced Hemoglobin Synthesis
Impaired Urinary Concentration
Impaired Wound Healing
Increased Bone Mineral Density
Increased Hemoglobin A2
Increased Hemoglobin F
Increased Hemoglobin Oxygen Affinity
Increased Red Cell Osmotic Fragility
Increased Red Cell Osmotic Resistance
Increased Susceptibility to Bacterial Infection
Infertility
Insulin Resistance
Interstitial Nephritis
Intracerebral Haemorrhage
Intracranial Hemorrhage
Intracranial Hypertension
Intracranial Hypotension
Intrahepatic Cholestasis
Intrauterine Growth Restriction
Iron Overload
Ischemia
Ischemic Cholitis
Isosthenuria
Jaundice
Joint Hypermobility
Kernicterus
Kidney Failure
Kyphosis
Left ventricular dysfunction
Left Ventricular Hypertrophy
Leg Ulcer
Leg Weakness
Lethargy
Leukaemia
Leukocytosis
Low Level Albuminuria
Low Reticulocyte Count
Lymphoma
Macroscopic hematuria
Megaloblastic Anemia
Membranous Nephropathy
Meningitis
Menorrhagia
Mesangial Hypercellularity
Mesenteric Venous Thrombosis
Microcytic Anemia
Microscopic hematuria
Migraine
Mild Anemia
Mild Sickle Cell Disease-S Beta Minus Thalassemia
Moderate Sickle Cell Disease-S Beta Minus Thalassemia
Mononeuropathy
Morbilliform Rash
Motor Aphasia
Moyamoya Disease
Muscle Atrophy
Muscle Cramps
Muscle Pain
Myocardial infarction
Myocardial Ischemia
Myocarditis
Myoglobinuria
Myopathy
Myositis
Nail Dysplasia
Nail Dystrophy
Narcolepsy
Neonatal Hyperbilirubinemia
Nephritis
Nephropathy
Nephrotic Range Proteinuria
Nephrotic Syndrome
Neurocognitive Impairment
Neurodevelopmental Abnormality
Neuron Degeneration
Neuropathic Pain
Neutropenia
Nocturia
None Anemic
Non-Proliferative Sickle Retinopathy
Non-specific Acute Lower Respiratory Tract Episode
Obesity
Obstructive Sleep Apnea
Oligomenorrhea
Oligospermia
Oliguria
Ophthalmologic Complication
Osteomalacia
Osteomyelitis
Osteonecrosis
Osteonecrosis of the Femoral Head
Osteopenia
Osteoporosis
Otitis Media
Pain
Pallor
Paralysis
Pericarditis
Perinatal Death
Peripheral Neuropathy
Petechiae
Pica
Pneumonia
Poikilocytosis
Polymerisation of Hemoglobin
Polymerised Hemoglobin
Polyneuropathy
Posterior reversible leukoencephalopathy
Postpartum Hemorrhage
Preeclampsia
Preterm Delivery
Priapism
Proliferative Sickle Retinopathy
Proteinuria
Pruritus
Psoriasis
Pulmonary Consolidation
Pulmonary Embolism
Pulmonary Hypertension
Pulmonary Infiltrate
Pyelonephritis
Pyoderma
Recurrent Wheeze in Sickle Cell Disease
Reduced Alpha/Beta Synthesis Ratio
Reduced Alpha/Gamma Synthesis Ratio
Reduced Beta/Alpha Synthesis Ratio
Reduced Hemoglobin A
Reduced or Absent Hemoglobin A
Renal Artery Stenosis
Renal Insufficiency
Renal Ischemia
Renal Medullary Carcinoma
Renal Papillary Necrosis
Renal Tubular Acidosis
Renal Vein Thrombosis
Respiratory Distress
Reticulocytopenia
Reticulocytosis
Retinal Detachment
Rheumatoid Arthritis
Right Upper Quadrant Syndrome
Salmon Patch Hemorrhage
SCD Related Pain
Sciatica
Scoliosis
Secondary Amenorrhea
Secondary Hemochromatosis
Secondary Hypothyroidism
Seizure
Sensory Neuropathy
Sepsis
Septic arthritis
Severe Anemia
Severe Sickle Cell Disease-S Beta Minus Thalassemia
Shoulder Dystocia
Sickle Beta Thalassemia
Sickle Cell Anemia Associated with Alpha Thalassemia
Sickle Cell Chronic Lung Disease
Sickle Cell Dactylitis
Sickle Cell Disease A/Jamaica Plain
Sickle Cell Disease A/S-Oman
Sickle Cell Disease C/S Antilles
Sickle Cell Disease-S Beta Minus Thalassemia
Sickle Cell Disease-S Beta Zero Thalassemia
Sickle Cell Disease-S/C-Harlem
Sickle Cell Disease-S/D-Punjab
Sickle Cell Disease-S/HPFH
Sickle Cell Disease-S/Lepore Boston
Sickle Cell Disease-S/O-Arab
Sickle Cell Disease-S/Quebec Chori
Sickle Cell Disease-S/S-South End
Sickle Cell Disease-SC
Sickle Cell Disease-SD
Sickle Cell Disease-SE
Sickle Cell Disease-SS
Sickle Cell Painful Event
Sickle Cell Related Cancer
Sickle Cell Thalassemia
Sickle Cell Trait
Sickle Cell Trait with a Severe Pyruvate Kinase Deficiency
Sickle Retinopathy
Sickled Erythrocytes
Sickling Hemoglobin with Two Beta-Globin Gene Substitutions
Skin Inflammation
Skin Lesions
Skin Rash
Skin Ulcer
Sleep Breathing Disorder
Spinal Cord Infarction
Splenic Infarction
Splenic Sequestration
Splenomegaly
Spondylolisthesis
Spontaneous Abortion
Steroid-Resistant Nephrotic Syndrome
Stroke
Stuttering Priapism
Subarachnoid Hemorrhage
Suicidal Thoughts
Symptoms Induced by Strenuous Exercise
Syncope
Systemic Lupus Erythematosus
Tachycardia
Thrombocytopenia
Transfusion Hemochromatosis
Transient Ischemic Attack
Transient Monocular Blindness
Tubular Proteinuria
Unstable Hemoglobin
Urticaria
Vaso-Occlusion
Vaso-Occlusive Crisis
Ventricular Hypertrophy
Ventricular Tachycardia
Vertebral Collapse
Visual Impairment
Vitamin B12 Deficiency
Vitreous Hemorrhage
Wheezing Episode with Co-Morbid Asthma
Zinc Deficiency

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SCD Registry Form

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