AOSupport

Uniting Families Affected by Adams-Oliver Syndrome.

Registry

We invite you to participate in the Adams-Oliver syndrome registry. By completing the questionnaire below for yourself or your loved one with Adams-Oliver syndrome, we can help medical professionals and other families better understand the effects and complications that can result from Adams-Oliver syndrome. We respect your privacy and will never release this information without your consent. If there is more than one individual affected by Adams-Oliver syndrome in your family, please fill out a separate questionnaire for each individual.
Personal Information
What is your relationship to the individual with Adams-Oliver syndrome?
Self
Parent
Grandparent
Other
We respect your privacy. Please help us understand how you wish for this information to be used.
It is okay to contact me in the future to complete a follow-up questionnaire
It is okay to share this medical information with health professionals
It is okay for health professionals to contact me about Adams Oliver Syndrome
It is okay to share this medical information with other parents or individuals with Adams Oliver Syndrome
It is okay to share my contact information with other parents or individuals with Adams Oliver Syndrome
I do not want this medical information shared with anyone
I do not want my contact information to be shared with anyone

Upper Limb Defects

Incomplete or underdevelopment of fingernail(s)
Absence of fingernail(s)
Webbing of finger(s)
Fused finger(s)
Short finger(s)
Absence of finger(s)
Absence of hand(s)
Short arm(s)
Absence of arm(s)
Other upper limb defects:   Lower Limb Defects

Incomplete on underdevelopment of toenail(s)
Absence of toenail(s)
Webbing of toes
Fused toes
Short toe(s)
Absence of toe(s)
Absence of a foot or feet
Short foot or feet
Short leg(s)
Absence of leg(s)
Other lower limb defects:
 Aplasia Cutis Congenita

Born with hairless scar-like patch(es) on the scalp
Born with open lesion(s) on the scalp
Born with open lesion(s) elsewhere
Underlying bone defect under the scalp defect
Skull defect without scalp defect
Acrania (absence of skull)
Other scalp defect:
Other skull defect:
 Cardiovascular Malformations

Bicuspid aortic valve
Double outlet right ventricle
Hypoplastic left heart syndrome
Parachute mitral valve
Pulmonary atresia
Tetralogy of fallot
Ventricular septal defect
Other Cardiovascular Malformation:
 Other Vascular Abnormalities

Aortic stenosis
Peripheral pulmonary stenosis
Portal hypertension
Valvular pulmonary stenosis
Cutis marmorata telangiectatica congenita
Cutis marmorata
Dilated scalp veins
Sinus pericranii
Pulmonary hypertension
Other vascular anomaly
 Central Nervous System Abnormalities

Mental retardation
Epilepsy
Developmental delays
Brain malformation
Seizures
Depression
ADD/ADHD
Other Central Nervous System Abnormaility:
 Other Anomalies

Cleft palate
Kidney malformation
Small kidneys
Lymphedema of leg
Poland syndrome
Spina bifida occulta
Other anomalies: