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Organization
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Afghanistan
Albania
Algeria
American Samoa
Andorra
Angola
Anguilla
Antarctica
Antigua & Barbuda
Argentina
Armenia
Aruba
Ascension Island
Australia
Austria
Azerbaijan
Bahamas
Bahrain
Bangladesh
Barbados
Belarus
Belgium
Belize
Benin
Bermuda
Bhutan
Bolivia
Bosnia & Herzegovina
Botswana
Bouvet Island
Brazil
British Indian Ocean Territory
British Virgin Islands
Brunei
Bulgaria
Burkina Faso
Burundi
Cambodia
Cameroon
Canada
Canary Islands
Cape Verde
Caribbean Netherlands
Cayman Islands
Central African Republic
Ceuta & Melilla
Chad
Chile
China
Christmas Island
Clipperton Island
Cocos (Keeling) Islands
Colombia
Comoros
Congo - Brazzaville
Congo - Kinshasa
Cook Islands
Costa Rica
Croatia
Cuba
Curaçao
Cyprus
Czechia
Côte d’Ivoire
Denmark
Diego Garcia
Djibouti
Dominica
Dominican Republic
Ecuador
Egypt
El Salvador
Equatorial Guinea
Eritrea
Estonia
Eswatini
Ethiopia
Falkland Islands
Faroe Islands
Fiji
Finland
France
French Guiana
French Polynesia
French Southern Territories
Gabon
Gambia
Georgia
Germany
Ghana
Gibraltar
Greece
Greenland
Grenada
Guadeloupe
Guam
Guatemala
Guernsey
Guinea
Guinea-Bissau
Guyana
Haiti
Heard & McDonald Islands
Honduras
Hong Kong SAR China
Hungary
Iceland
India
Indonesia
Iran
Iraq
Ireland
Isle of Man
Israel
Italy
Jamaica
Japan
Jersey
Jordan
Kazakhstan
Kenya
Kiribati
Kosovo
Kuwait
Kyrgyzstan
Laos
Latvia
Lebanon
Lesotho
Liberia
Libya
Liechtenstein
Lithuania
Luxembourg
Macao SAR China
Madagascar
Malawi
Malaysia
Maldives
Mali
Malta
Marshall Islands
Martinique
Mauritania
Mauritius
Mayotte
Mexico
Micronesia
Moldova
Monaco
Mongolia
Montenegro
Montserrat
Morocco
Mozambique
Myanmar (Burma)
Namibia
Nauru
Nepal
Netherlands
Netherlands Antilles
New Caledonia
New Zealand
Nicaragua
Niger
Nigeria
Niue
Norfolk Island
Northern Mariana Islands
North Korea
North Macedonia
Norway
Oman
Outlying Oceania
Pakistan
Palau
Palestinian Territories
Panama
Papua New Guinea
Paraguay
Peru
Philippines
Pitcairn Islands
Poland
Portugal
Puerto Rico
Qatar
Romania
Russia
Rwanda
Réunion
Samoa
San Marino
Sark
Saudi Arabia
Senegal
Serbia
Seychelles
Sierra Leone
Singapore
Sint Maarten
Slovakia
Slovenia
Solomon Islands
Somalia
South Africa
South Georgia & South Sandwich Islands
South Korea
South Sudan
Spain
Sri Lanka
St. Barthélemy
St. Helena
St. Kitts & Nevis
St. Lucia
St. Martin
St. Pierre & Miquelon
St. Vincent & Grenadines
Sudan
Suriname
Svalbard & Jan Mayen
Sweden
Switzerland
Syria
São Tomé & Príncipe
Taiwan
Tajikistan
Tanzania
Thailand
Timor-Leste
Togo
Tokelau
Tonga
Trinidad & Tobago
Tristan da Cunha
Tunisia
Turkmenistan
Turks & Caicos Islands
Tuvalu
Türkiye
U.S. Outlying Islands
U.S. Virgin Islands
Uganda
Ukraine
United Arab Emirates
United Kingdom
United States
Uruguay
Uzbekistan
Vanuatu
Vatican City
Venezuela
Vietnam
Wallis & Futuna
Western Sahara
Yemen
Zambia
Zimbabwe
Åland Islands
Country Data Was Collected
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Afghanistan
Albania
Algeria
American Samoa
Andorra
Angola
Anguilla
Antarctica
Antigua & Barbuda
Argentina
Armenia
Aruba
Ascension Island
Australia
Austria
Azerbaijan
Bahamas
Bahrain
Bangladesh
Barbados
Belarus
Belgium
Belize
Benin
Bermuda
Bhutan
Bolivia
Bosnia & Herzegovina
Botswana
Bouvet Island
Brazil
British Indian Ocean Territory
British Virgin Islands
Brunei
Bulgaria
Burkina Faso
Burundi
Cambodia
Cameroon
Canada
Canary Islands
Cape Verde
Caribbean Netherlands
Cayman Islands
Central African Republic
Ceuta & Melilla
Chad
Chile
China
Christmas Island
Clipperton Island
Cocos (Keeling) Islands
Colombia
Comoros
Congo - Brazzaville
Congo - Kinshasa
Cook Islands
Costa Rica
Croatia
Cuba
Curaçao
Cyprus
Czechia
Côte d’Ivoire
Denmark
Diego Garcia
Djibouti
Dominica
Dominican Republic
Ecuador
Egypt
El Salvador
Equatorial Guinea
Eritrea
Estonia
Eswatini
Ethiopia
Falkland Islands
Faroe Islands
Fiji
Finland
France
French Guiana
French Polynesia
French Southern Territories
Gabon
Gambia
Georgia
Germany
Ghana
Gibraltar
Greece
Greenland
Grenada
Guadeloupe
Guam
Guatemala
Guernsey
Guinea
Guinea-Bissau
Guyana
Haiti
Heard & McDonald Islands
Honduras
Hong Kong SAR China
Hungary
Iceland
India
Indonesia
Iran
Iraq
Ireland
Isle of Man
Israel
Italy
Jamaica
Japan
Jersey
Jordan
Kazakhstan
Kenya
Kiribati
Kosovo
Kuwait
Kyrgyzstan
Laos
Latvia
Lebanon
Lesotho
Liberia
Libya
Liechtenstein
Lithuania
Luxembourg
Macao SAR China
Madagascar
Malawi
Malaysia
Maldives
Mali
Malta
Marshall Islands
Martinique
Mauritania
Mauritius
Mayotte
Mexico
Micronesia
Moldova
Monaco
Mongolia
Montenegro
Montserrat
Morocco
Mozambique
Myanmar (Burma)
Namibia
Nauru
Nepal
Netherlands
Netherlands Antilles
New Caledonia
New Zealand
Nicaragua
Niger
Nigeria
Niue
Norfolk Island
Northern Mariana Islands
North Korea
North Macedonia
Norway
Oman
Outlying Oceania
Pakistan
Palau
Palestinian Territories
Panama
Papua New Guinea
Paraguay
Peru
Philippines
Pitcairn Islands
Poland
Portugal
Puerto Rico
Qatar
Romania
Russia
Rwanda
Réunion
Samoa
San Marino
Sark
Saudi Arabia
Senegal
Serbia
Seychelles
Sierra Leone
Singapore
Sint Maarten
Slovakia
Slovenia
Solomon Islands
Somalia
South Africa
South Georgia & South Sandwich Islands
South Korea
South Sudan
Spain
Sri Lanka
St. Barthélemy
St. Helena
St. Kitts & Nevis
St. Lucia
St. Martin
St. Pierre & Miquelon
St. Vincent & Grenadines
Sudan
Suriname
Svalbard & Jan Mayen
Sweden
Switzerland
Syria
São Tomé & Príncipe
Taiwan
Tajikistan
Tanzania
Thailand
Timor-Leste
Togo
Tokelau
Tonga
Trinidad & Tobago
Tristan da Cunha
Tunisia
Turkmenistan
Turks & Caicos Islands
Tuvalu
Türkiye
U.S. Outlying Islands
U.S. Virgin Islands
Uganda
Ukraine
United Arab Emirates
United Kingdom
United States
Uruguay
Uzbekistan
Vanuatu
Vatican City
Venezuela
Vietnam
Wallis & Futuna
Western Sahara
Yemen
Zambia
Zimbabwe
Åland Islands
SCD Phenotypes being collected
Acute Tubular Necrosis
Acute Symptomatic Seizure
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
Data collected Start Date
Data collected End Date (if it exists)
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?
Does your ethical approval allow data sharing?
- Select -
Yes
No
Not Sure
Funders
Name & Surname of a Trainee from your group
Do you genotype data for some/or all of your samples?
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Yes
No
Please add any comments/suggestions/questions
Please indicate whether you are willing to be a Lead PI for a multi-site collaborative research study
- None -
Yes
No
Maybe
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