Module 3

Module 3 – Illnesses or Medical Problems

Moico Module 7 Alt
This module is completed when entering the patient registry and again annually to collect information on symptoms related to Angelman syndrome such as Reflux, constipation, strabismus etc.
NoCodeQuestionResponse
 

MedNewFol

Is this the first time you are completing this module?1 – Yes, first time;
2 – No, follow up
B.1.1

12MoMedIll

Has there been any changes to the following medical conditions in your child/ adult in the last 12 months?1 – Gastrointestinal reflux;
2 – Constipation;
3 – Vomiting with feeds;
4 – Gagging;
5 – Pneumonia;
6 – Strep throat;
7 – Toe walking;
8 – Tight heel cords;
9 – Scoliosis;
10 – Dental problems ;
11 – Obesity;
12 – Tube feeding;
13 – Strabismus;
14 – Cortical visual impairment;
15 – Ear infections (Otis media);
16 – Auditory processing disorders;
17 – Cortical myoclonus (tremors);
18 – Diagnosed allergies;
19 – Intolerances;
20 – Other
B.1.212MoActFoodHas there been any changes to the following in your child/ adult? 
3.1 Gastrointestinal Problems – Has your child/adult ever experienced any of the following: (GastrointestinalProblems)
NoCodeQuestionResponse
3.3.1a

ANGGastroesophagealReflux2

Gastroesophageal reflux?1 – None;
2 – Never formally diagnosed, but compatible history;
3 – Yes, diagnosed
3.3.2

ANGGastroesophageal
RefluxStat

What is the current status of their  gastroesophageal reflux?
Please indicate the current status of this medical condition in your child/ adult.
1 – Currently experiencing;
2 – Intermittently experiencing/ episodic;
3 – Resolved;
4 – Unknown
3.3.3aANGGastroRefluxDiagnosed2What was their age at diagnosis? 
3.3.5ANGGastroRefluxDiagnosedSeverWhat is the severity?1 – Mild;
2 – Moderate;
3 – Severe;
4 – Varied;
5 – Unknown
3.3.6ANGGastroRefluxDiagnosedTreatWas medical treatment required?1 – Yes;
2 – No;
3 – Unknown
4.3.7ANGGastroRefluxDiagnosedSurgWas surgical treatment required?

1 – Yes;
2 – No;
3 – Recommended, but not done;
4 – Unknown

3.3.8aANGGastroRefluxRecurred2What was their age at which the gastroesophageal reflux recurred? 
3.3.10ANGGastroRefluxResolvedSeverWhat is the severity when recurring?1 – Mild;
2 – Moderate;
3 – Severe;
4 – Varied;
5 – Unknown
3.3.11ANGGastroRefluxRecurredTreatmeWas medical treatment required when recurring?1 – Yes;
2 – No;
3 – Unknown
3.3.12ANGGastroRefluxRecurredSurgeyWas surgical treatment required when recurring? (Please describe surgery in the Medical History and Hospitalisation module)

1 – Yes;
2 – No;
3 – Recommended, but not done;
4 – Unknown

3.3.13aANGGastroRefluxResolved2What was their age when resolved? 
3.4.1ANGEverConstipationConstipation?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
3.4.2ANGMedConstipation StatusWhat is the current status of their  constipation? Please indicate the current status of this medical condition in your child/ adult.
1 – Currently experiencing;
2 – Intermittently experiencing/ episodic;
3 – Resolved;
4 – Unknown
3.4.3ANGConstipationSeverWhat is the severity during episodes?1 – Mild;
2 – Moderate;
3 – Severe;
4 – Varied;
5 – Unknown
3.4.4ANGConstipationManageHow is the constipation (or regular bowel function) managed? (check all that apply)1 – Dietary;
2 – Medication;
3 – Other
3.4.5ANGConstipationOthPlease specify. 
3.5.1ANGVomitingWithFeedsVomited with feeds (after 12 months of age)?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
3.5.2ANGVomitingWithFeeds StatusWhat is the current status of their  vomiting with feeds? Please indicate the current status of this medical condition in your child/ adult.1 – Currently experiencing;
2 – Intermittently experiencing/ episodic;
3 – Resolved;
4 – Unknown
3.5.3

ANGVomitingWithFeeds

Medical

Was medical treatment required?1 – Yes;
2 – No;
3 – Unknown
3.5.4

ANGVomitingWithFeedsSurgery

Was surgical treatment required?

1 – Yes;
2 – No;
3 – Recommended, but not done;
4 – Unknown

3.6.1ANGGaggingGagging (after 12 months of age)?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
3.6.2ANGGaggingStatusWhat is the current status of  their gagging?
Please indicate the current status of this medical condition in your child/ adult.

1 – Currently experiencing;
2 – Intermittently experiencing/ episodic;
3 – Resolved;
4 – Unknown

3.6.3aANGGaggingSituationsPlease indicate the situation/s when gagging occurs1 – Eating/ Feeding/ Drinking;
2 – Mornings/ after sleeping;
3 – Sensory ;
4 – Emotional situations ;
5 – Illness ;
6 – Taking medication;
7 – Seizure;
8 – Brushing teeth;
9 – Infancy only
10 – Other
3.6.3ANGGaggingYesPlease specify 
3.2 Throat/ Respiratory Problems – Has your child/adult ever experienced any of the following: (ThroatRespiratoryProblems)
NoCodeQuestionResponse
3.1.1ANGPneumoniaPneumonia?1 – Yes;
2 – No;
3 – Unknown
3.1.2ANGMedPneumonia StatusWhat is the current status of their pneumonia? Please indicate the current status of this medical condition in your child/ adult.1 – Currently experiencing;
2 – Intermittently experiencing/ episodic;
3 – Resolved;
4 – Unknown
3.1.3

ANGPneumonia
Aspiration

Was it related to aspiration?1 – Yes;
2 – No;
3 – Unknown
3.1.4ANGPneumoniaFreqPlease indicate the number of episodes per year1 – One off episode;
2  – 1-2 episodes ;
3 – 3 or more episodes 
3.1.5ANGPneumoniaSeverWhat is the severity during episodes?1 – Mild;
2 – Moderate;
3 – Severe;
4 – Varied;
5 – Unknown
3.2.1ANGStrepThroatStrep throat?1 – Yes;
2 – No;
3 – Unknown
3.2.2ANGMedStrepThroat StatusWhat is the current status of their  strep throat? Please indicate the current status of this medical condition in your child/ adult.1 – Currently experiencing;
2 – Intermittently experiencing/ episodic;
3 – Resolved;
4 – Unknown
3.2.3ANGStrepThroatFreqPlease indicate the number of episodes per year1 – One off episode;
2  – 1-2 episodes ;
3 – 3 or more episodes  
3.2.4ANGStrepThroatSeverWhat is the severity during episodes?1 – Mild;
2 – Moderate;
3 – Severe;
4 – Varied;
5 – Unknown
3.3 Musculoskeletal Problems – Has your child/adult ever experienced any of the following: (MusculoskeletalProblems)
NoCodeQuestionResponse
3.7.1ANGToeWalkingToe walking?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
3.7.2ANGToeWalkingStatusWhat is the current status of their tight heel cords/ toe walking? Please indicate the current status of this medical condition in your child/ adult.1 – Currently experiencing;
2 – Intermittently experiencing/ episodic;
3 – Resolved;
4 – Unknown
3.7.3ANGToeWalkingTreatmentPlease indicate any treatments used
(Check all that apply. Please describe surgery in the Medical History and Hospitalisation module)
1 – Ankle-foot orthosis ;
2 – Surgery;
3 – Physical therapy;4 – No treatment
3.7.1aANGTightHeelCordsTight heel cords?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
3.7.2aANGTightHeelStatusWhat is the current status of their tight heel cords? Please indicate the current status of this medical condition in your child/ adult.1 – Currently experiencing;
2 – Intermittently experiencing/ episodic;
3 – Resolved;
4 – Unknown
3.7.3aANGTightHeelTreatmentPlease indicate any treatments used
(Check all that apply. Please describe surgery in the Medical History and Hospitalisation module)
1 – Ankle-foot orthosis (AFO);
2 – Surgery;
3 – Physical therapy;
4 – No treatment
3.8.1ANGSCOLIOSISDoes (or did) the individual exhibit scoliosis (curvature of the spine)?1 – Yes;
2 – No;
3 – Unknown
3.8.3ANGScoliosisTreatmentUsedIf yes to scoliosis, please indicate any treatments used (Check all that apply)1 – Observation;
2 – Backbrace;
3 – Surgery;
4  – Other
3.8.4aANGAgeScoliosisDiagnosed2What was their age at diagnosis? 
3.8.6aANGAgeBracingYears2What was their age when bracing was commenced? 
3.9.1ANGDentalProblemsDoes (or did) the individual with Angelman Syndrome have any dental problems?1 – Yes;
2 – No;
3 – Unknown
3.9.2ANGDentalProblems StatusWhat is the current status of  their dental problems? Please indicate the current status of this medical condition in your child/ adult.1 – Currently experiencing;
2 – Intermittently experiencing/ episodic;
3 – Resolved;
4 – Unknown
3.9.3a

ANGDentalProblemsFillings

Please indicate the number of fillings1 – None,
2 – 1-4,
3 – 5-9,
4 – More than 10
3.4 Nutrition and Feeding – Has your child/adult ever experienced any of the following: (NutritionFeeding)
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3.10.1aANGOverweightOverweight?1 – Yes;
2 – No;
3 – Unknown
3.10.1ANGObesityClassified as obese?
For a definition of obesity, please visit: https://www.who.int/dietphysicalactivity/ childhood_what/en/
1 – Yes;
2 – No;
3 – Unknown
3.10.2ANGObesityStatusWhat is the current status of their obesity? Please indicate the current status of this medical condition in your child/ adult.1 – Currently experiencing;
2 – Intermittently experiencing/ episodic;
3 – Resolved;
4 – Unknown
3.10.3aANGObesityAge2Please indicate the age of onset 
3.11.1ANGFailuretoThriveFood refusal/ failure to thrive over 12 months of age? 1 – Yes;
2 – No;
3 – Unknown
3.11.2ANGFailuretoThrive StatusWhat is the current status of their  failure to thrive? Please indicate the current status of this medical condition in your child/ adult.1 – Currently experiencing;
2 – Intermittently experiencing/ episodic;
3 – Resolved;
4 – Unknown
3.11.3aANGFailureToThriveOnsetYears2What was their age at onset of failure to thrive? 
3.11.6aANGFailureToThriveYears2What was the duration of failure to thrive? 
3.12.1ANGTubeFedTube feeding (after 12 months of age)?1 – Yes;
2 – No;
3 – Unknown
3.12.2ANGTubeFedStatusWhat is the current status of their  tube feeding? Please indicate the current status of this medical condition in your child/ adult.1 – Currently experiencing;
2 – Intermittently experiencing/ episodic;
3 – Resolved;
4 – Unknown
3.12.3ANGTubeFedYesTypePlease indicate the type used
(Check all that apply)

1 – NG tube;
2 – OG tube;
3 – Gastrostomy tube 

3.12.4aANGTubeFedYears2What was the duration of tube feeding? 
3.12.7ANGTubeYesReasonPlease indicate the reason for placement
(Check all that apply)

1 – Inability to feed orally as infant;
2 – Gastroesophageal reflux disease;
3 – Vomiting;
4 – Food refusal;
5 – Complications;
6 – Failure to thrive 

3.12.8ANGTubeHowPlease indicate how they are  tube fed
(Check all that apply)
1 – Medications;
2 – Nutrition using bolus feeds;
3 – Nutrition using overnight feeds 
3.12.9ANGTubeComplicationsIf there were complications with tube feeding, please describe 
3.10.5ANGObesityHeightWhat is your child/ adult’s current height in metres/metres? (metres/meters – imperial to metric converter: https://www.metric-conversions.org/length/feet-to-meters.htm) 
3.10.8ANGObesityWeightWhat is your child/ adult’s current weight  in kg? (kg – – imperial to metric converter: https://www.metric-conversions.org/weight/pounds-to-kilograms.htm) 
3.10.10ANGBMImetricBMI Calculated
3.10.12ANGObesityActivityPlease describe  their activity level.1 – Decreased;
2 – Increased;
3 – Normal;
4 – Unknown 
3.10.13ANGObesityExcessiveIntakePlease describe their  food intake.1 – Decreased;
2 – Increased;
3 – Normal;
4 – Unknown 
3.10.14ANGObesityFoodSeekingDoes  they exhibit food seeking behaviours?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
3.5 Sensory Problems – Has your child/adult ever experienced any of the following: (SensoryProblems)
NoCodeQuestionResponse
3.13.1ANGStrabismusStrabismus ? Strabismus is a vision condition in which a person can not align both eyes simultaneously under normal conditions. One or both of the eyes may turn in, out, up or down. An eye turn may be constant  or intermittent .1 – Yes;
2 – No;
3 – Unknown
3.13.2ANGStrabismusStatusWhat is the current status of their strabismus? Please indicate the current status of this medical condition in your child/ adult.1 – Currently experiencing;
2 – Intermittently experiencing/ episodic;
3 – Resolved;
4 – Unknown
3.13.3ANGStrabismusTreatmentPlease indicate any treatments used 
(Check all that apply. Please describe surgery in the Medical History and Hospitalisation module)
1 – Glasses;
2 – Patching;
3 – Surgery;
4 No treatment;
5 – Other 
3.13.5ANGStrabismusRecurTreatWere recurrences of strabismus treated?1 – Yes;
2 – No;
3 – Unknown
3.13.6ANGMedCorticalCortical visual impairment?1 – Yes;
2 – No;
3 – Unknown
3.13.7ANGMedCorticalStatusWhat is the current status of their cortical visual impairment? Please indicate the current status of this medical condition in your child/ adult.1 – Currently experiencing;
2 – Intermittently experiencing/ episodic;
3 – Resolved;
4 – Unknown
3.14.1ANGOtitisMediaEar infections (otitis media)?1 – Yes;
2 – No;
3 – Unknown
3.14.2ANGOtitisMediaStatusWhat is the current status of  their otitis media? Please indicate the current status of this medical condition in your child/ adult.1 – Currently experiencing;
2 – Intermittently experiencing/ episodic;
3 – Resolved;
4 – Unknown
3.14.3ANGOtitisMediaYesPlease indicate the number of episodes per year

1 – One off episode;
2 – 1 – 5 episodes per year;
3- > 5 episodes per year 

3.14.4AngMedHearingHave they ever had their hearing tested?1 – Yes;
2 – No;
3 – Unknown
3.14.5ANGHearingResultWhat were the results?1 – Typical/Normal;
2 – Abnormal;
3 – Unknown 
3.6 Neurological Problems – Has your child/adult ever experienced any of the following: (ANGNeurological)
NoCodeQuestionResponse
3.15.1AngMedAuditoryAuditory processing disorders? (Auditory processing disorder (APD) is a hearing problem that affects about 5% of school-aged children. Children with this condition can’t process what they hear in the same way other children do because their ears and brain don’t fully coordinate)1 – Yes;
2 – No;
3 – Unknown
3.15.2ANGMedAuditoryStatusWhat is the current status of their auditory processing disorders?
Please indicate the current status of this medical condition in your child/ adult.
1 – Currently experiencing;
2 – Intermittently experiencing/ episodic;
3 – Resolved;
4 – Unknown
3.15.3AngMedCorticalMyoclonusCortical myoclonus (tremors)?1 – Yes;
2 – No;
3 – Unknown
3.15.4ANGMedCorticalMyoclonusStatusWhat is the current status of their cortical myoclonus? Please indicate the current status of this medical condition in your child/ adult.1 – Currently experiencing;
2 – Intermittently experiencing/ episodic;
3 – Resolved;
4 – Unknown
3.15.5aANGMedCorticalOnsetYears2What was their age at onset of cortical myoclonus? 
3.15.8ANGMedCorticalSeverityWhat is the severity?1 – Mild;
2 – Moderate;
3 – Severe;
4 – Varied;
5 – Unknown

 

3.7 Allergies and Intolerances – Has your child/adult ever experienced any of the following: (ANGIntolerances)
NoCodeQuestionResponse
4.1.1ANGAllergiesDiagnosed allergies? (An allergy occurs when a person’s immune system reacts to substances in the environment that are harmless for most people. These substances are known as allergens and are found in house dust mites, pets, pollen, insects, moulds, foods and some medicines.)1 – Yes;
2 – No;
3 – Unknown
4.1.4ANGMedAllergieStatusWhat is the current status of their  allergies? Please indicate the current status of this medical condition in your child/ adult.1 – Currently experiencing;
2 – Intermittently experiencing/ episodic;
3 – Resolved;
4 – Unknown
4.1.2ANGAllergiesTypePlease indicate the types of allergies 1 – Dairy products;
2 – Gluten or wheat;
3 – Egg;
4 – Nuts;
5 – Sugar;
6 – Other food;
7 – Environmental triggers;
8 – Seasonal;
9 – Medications;
10 – Insect bites or stings;
11 – Other
4.1.3ANGAllergySpecifyPlease specify details of allergies 
4.2.1ANGIntolerancesIntolerances? (Intolerance is an inability to eat a food or take a drug without adverse effects. Unlike an allergy, it does not involve the immune system or cause severe allergic reactions such as anaphylaxis.)1 – Yes;
2 – No;
3 – Unknown
4.2.3ANGMedIntolerance StatusWhat is the current status of their  intolerances? Please indicate the current status of this medical condition in your child/ adult.1 – Currently experiencing;
2 – Intermittently experiencing/ episodic;
3 – Resolved;
4 – Unknown
4.2.2aANGIntoleranceTypePlease indicate the types of intolerances 
(Check all that apply)
1 – Dairy products;
2 – Gluten or wheat;
3 – Egg;
4 – Nuts;
5 – Sugar;
6 – Other food;
7 – Environmental triggers;
8 – Seasonal;
9 – Medications;
10 – Insect bites or stings;
11 – Other
4.2.2ANGIntolerancesDetailsPlease specify details of intolerances 
3.8 Other Medical Conditions (ANGOther)
NoCodeQuestionResponse
3.16.1AngMedConditionYes1Has your child/ adult had any other medical conditions that have not been covered?1 – Yes;
2 – No
3.16.2AngMedCondition1If yes, what is the condition? 
3.16.3ANGMedCondition1StatusWhat is the current status of this condition? Please indicate the current status of this medical condition in your child/ adult.1 – Currently experiencing;
2 – Intermittently experiencing/ episodic;
3 – Resolved;
4 – Unknown
3.16.4aANGMedOnsetYears1aWhat was the age at onset of the condition? 
3.16.7ANGMedSeverity1What is the severity, if applicable?1 – Mild;
2 – Moderate;
3 – Severe;
4 – Varied;
5 – Unknown
3.16.9ANGMedRecurFreq1If episodic or recurring, how often does the condition recur?

1 – One off episode;
2 – Less than once a year;
3 – 1 – 5 episodes per year;
4 – 5 or more episodes per year 

3.16.10ANGMedOtherComment1Do you have any other comments about this condition? 
Providing Insight & Research into Angelman Syndrome
Creating new opportunities, insight & understanding.
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