Module 1

Module 1 – Newborn and infancy history

Moico Module 2 Alt

Feeding, behaviours, health problems and developmental behavioural in the newborn and infancy period.

1.1 Did the child reside with you in (ANGNewbornInfancyReside)
NoCodeQuestionResponse
0.1.1ResideNewbornThe first 4 weeks of their life?1 – Yes;
2 – No (Range/ RadioButton; PVG YesNo)
0.1.2ResideNewbornThe first 1-12 months of their life?1 – Yes;
2 – No (Range/ RadioButton; PVG YesNo)
1.1 Newborn (0-1 month) (ANGNewbornHistory)
NoCodeQuestionResponse
1.1.2ANGHOWFEDINFANCYDescribe feeding during infancy1 – Breastfed;
2 – Bottlefed;
3 – Other
1.1.6aANGAgeStoppedBreastfeeding2At what age was breastfeeding stopped? 
1.1.6bANGAgeStoppedBottlefeeding2At what age was bottlefeeding stopped? 
1.1.3ANGFeedingDifficultiesDoes/did the individual with Angelman Syndrome experience feeding difficulties as a newborn?1 – Yes, all the time;
2 – Yes, most of the time;
3 – Yes, some of the time;
4 – Yes, rarely;
5 – No, never;
6 – Unknown
1.1.4ANGBreastFedEffortIf difficulties were experienced, was assistance used at any time in their infancy (e.g. lactation support, syringes, spooning in pumped milk)? Please note that there is an option to provide more details belowAs above
1.1.5ANGIfUnableToBreastBottleFeedIf the individual was unable to breast or bottle feed, please describe how he/she is/was fed as a newborn.Participant specifies
1.1.8ANGRefusalToNurseIs/was there refusal to nurse?
1 – Yes, all the time;
2 – Yes, most of the time;
3 – Yes, some of the time;
4 – Yes, rarely;
5 – No, never;
6 – Unknown
1.1.9ANGCouldNotLatchCan/could not latch?As above
1.1.10ANGIneffectiveSuckIneffective suck?As above
1.1.11ANGBitingWas there biting?As above
1.1.15ANGIrritablefeedDoes/did he/she appear irritable in association with feeding?As above
1.2 Newborn (0-1 month): Health and Behavioural (ANGNewbornHistory2)
NoCodeQuestionResponse
1.1.12ANGVomitingWas there vomiting?As above
1.1.13ANGArchingWas there arching?As above
1.1.14ANGExcessiveMovementDoes/did he/she show excessive movements?As above
1.1.1ANGDifficultyMaintainingTempDoes/did the individual with Angelman Syndrome have difficulties maintaining or regulating proper body temperature?1 – Yes, all the time;
2 – Yes, most of the time;
3 – Yes, some of the time;
4 – Yes, rarely;
5 – No, never;
6 – Unknown
1.1.17ANGNewbornSleepWas there difficulty sleeping?As above
1.1.18ANGNewbornCryExcessPlease describe your child’s crying1 – Excessive/ constant;
2 – Rarely or never cried;
3 – Unusual sounding cry
1.1.19ANGOthBehListWere there any behavioural or developmental concerns? (check any/ all that apply)1 – Excessive irritability;
2 – Developmental delays;
3 – Unusual or repetitive movements;
4 – Unusual or repetitive behaviours;
5 – Smiling/ Laughter;
6 – Did not communicate needs (eg cry when hungry);
7 – Did not respond/ seem interested in caregiver/ people;
8 – Did not seem interested in surroundings;
9 – Other
1.1.16ANGOthBehProblemsPlease specify 
1.1.20ANGOtherHealthProblemsWere there any other health problems? (check any/ all that apply)1 – Gastrointestinal problems/ reflux;
2 – Failure to thrive; Intolerances or allergies;
3 – Breathing/ respiratory difficulties;
4 – Seizures;
5 – Vision/ Eye problem;
6 – Illness requiring medical care;
7 – Other
1.1.21ANGOtherHealthProblemsYESPlease describe 
1.3 Infancy (1-12 months): Temperament (ANGInfancyHistory)
NoCodeQuestionResponse
1.2.1ANGHappyIs/was the individual with Angelman Syndrome happy in the first 12 months of their life?1 – Yes, all the time;
2 – Yes, most of the time;
3 – Yes, some of the time;
4 – Yes, rarely;
5 – No, never;
6 – Unknown
1.2.2ANGPlacidIs/was he/she easy going in the first 12 months of their life?As above
1.2.3ANGEasyGoingIs/was he/she easy going in the first 12 months of their life?As above
1.2.4ANGAffectionateIs/was he/she affectionate in the first 12 months of their life?As above
1.4 Infancy (1-12 months): Feeding (ANGInfancyHistory2)
NoCodeQuestionResponse
1.2.5ANGSuckSwallowAre/were there any difficulties with suck/swallow?As above
1.2.6ANGFailGainAre/were there any difficulties with failure to gain weight?As above
1.2.7ANGRefluxGastroOesophAre/were there any reflux/gastro/oesophageal problems?As above
1.2.8ANGTransitionSolidAre/were there any difficulties with transitioning to solid food?As above
1.5 Infancy (1-12 months): Respiratory (ANGInfancyHistory3)
NoCodeQuestionResponse
1.2.9ANGAsthmaWheezingAre/were there any difficulties with asthma/wheezing?As above
1.2.10ANGCoughingAre/were there any difficulties with coughing?As above
1.2.11ANGpneumoniadiffAre/were there any difficulties with pneumonia?As above
1.2.12ANGbronchitisAre/were there any difficulties with bronchitis?As above
 
1.6 Infancy (1-12 months): Other Health and Behavioural (ANGInfancyHistory4)
NoCodeQuestionResponse
1.2.16ANGInfancySleepWas there difficulty sleeping ?1 – Yes, all the time;
2 – Yes, most of the time;
3 – Yes, some of the time;
4 – Yes, rarely;
5 – No, never;
6 – Unknown (Range/ DefaultWidget;
ANGBEHDEVFUNCTIONSCALE)
1.2.17ANGInfancyCryExcessPlease describe your child’s crying1 – Excessive/ constant;
2 – Rarely or never cried;
3 – Unusual sounding cry
1.2.18ANGOthBehListWere there any behavioural or developmental concerns ?1 – Excessive irritability;
2 – Developmental delays;
3 – Unusual or repetitive movements;
4 – Unusual or repetitive behaviours;
5 – Smiling/ Laughter;
6 – Did not communicate needs ;
7 – Did not respond/ seem interested in caregiver/ people;
8 – Did not seem interested in surroundings;
9 – Other
1.2.13ANGOthBehProblemsAre/were there any other behavioural issues during this period? 
1.2.19ANGOtherHealthListWere there any other health problems ?1 – Gastrointestinal problems/ reflux;
2 – Failure to thrive; Intolerances or allergies;
3 – Breathing/ respiratory difficulties;
4 – Seizures;
5 – Vision/ Eye problem;
6 – Illness requiring medical care;
7 – Other
1.2.15ANGOtherHealthProblemsYESPlease describe 
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