Application for Level 2 Access to the Global Angelman Syndrome Registry

Application for Level 2 Access to the Global Angelman Syndrome Registry

This form is required if you wish to request Level 2access to the Global Angelman Syndrome Registry.

Part 1: Requestor/ Principal Investigator Information

Requestor/ PI Name and Title:

Requestor/ PI Qualifications:

Requestor/ PI Affiliation/ Company:

Requestor/ PI Email:

Requestor/ PI Mailing Address:

Street Address 1

Street Address 2

City

State/ Providence

Zip/ Postal Code

Country

Proposed Research Partners, if relevant:

Project Sponsor, if relevant:

Part 2: Project Information

Project Title:

Project description, 1000 words max. Include:

- Purpose- Specific aims- Background

- Methods/ analysis- Source of funding- Reason for registry access

Time frame for project completion:

Has this project been reviewed by an Institutional Review Board (IRB) or Human Research Ethics Committee (HREC)? Yes ☐ No ☐

IRB/ HREC name:

IRB/ HREC approval number:

[INSERT PROJECT DESCRIPTION HERE]

Part 3a: Request Information

Requesting raw data file in .csv format:Yes☐No ☐

Data search only, please describe. Include the following:

- Timeframes (e.g individuals born from 2001 onwards, hospitalisations and medications from 2011 to 2016 inclusive)

- Inclusion or exclusion criteria (e.g. males only, individuals with deletions)

- Outline of request (e.g. medications and medication conditions by age and gender)

[INSERT REQUEST HERE]

Part 3b: Data Elements Requested

If you are requesting a raw data file in .csv format, please check the boxes to indicate the data elements you require. Indicate any parameters for the dataset below (e.g. individuals born after 1 January 1970):

Exclusion criteria:

Module 0. Demographics (request all in this module ☐)

Demographics
0.2.5 Date of birth (birth year only given) / ☐ / 0.2.7 Country of birth / ☐
0.2.9 Sex / ☐ / 0.3.6 Country of residence / ☐
0.2.14 Living status / ☐

Note: identifiable/ potentially reidentifiable information cannot be provided

Module 1. Newborn and Infancy (request all in this module ☐)

Newborn history (0-1 Month; request all in this section ☐)
1.1.1 Difficulty maintaining temperature / ☐ / 1.1.9 Inability to latch / ☐
1.1.2 Description of feeding during infancy / ☐ / 1.1.10 Ineffective suck / ☐
1.1.3 Experienced difficulties feeding as a newborn / ☐ / 1.1.11 Biting / ☐
1.1.4 Feeding assistance used / ☐ / 1.1.12 Vomiting / ☐
1.1.5 Description of how individual was fed as a newborn / ☐ / 1.1.13 Arching / ☐
1.1.6 Age individual stopped breastfeeding (years) / ☐ / 1.1.14 Excessive movements / ☐
1.1.7 Age individual stopped breastfeeding (months) / ☐ / 1.1.15Irritable with feeds / ☐
1.1.8 Refusal to nurse / ☐ / 1.1.16 Other behavioural issues / ☐
Infancy history (1-12 Months; request all in this section ☐)
1.2.1 Happy in first 12 months of life / ☐ / 1.2.9 Difficulties with asthma/wheezing / ☐
1.2.2 Placid in first 12 months of life / ☐ / 1.2.10 Difficulties with coughing / ☐
1.2.3 Easy going in first 12 months of life / ☐ / 1.2.11 Difficulties with pneumonia / ☐
1.2.4 Affectionate in first 12 months of life / ☐ / 1.2.12 Difficulties with bronchitis / ☐
1.2.5 Difficulties with suck/ swallow / ☐ / 1.2.13 Other behavioural issues / ☐
1.2.6 Difficulties with failure to gain weight / ☐ / 1.2.14 Other health problems / ☐
1.2.7 Reflux/gastro/oesophageal problems / ☐ / 1.2.15 Description of other health problems / ☐
1.2.8 Difficulties with transitioning to solid food / ☐

Module 2. History of Diagnosis and Results (request all in this module ☐)

History of Diagnosis (request all in this section ☐)
2.1.1 Age at diagnosis (years) / ☐ / 2.1.7History that led to diagnosis (other) / ☐
2.1.2 Age at diagnosis (months) / ☐ / 2.1.8Misdiagnoses / ☐
2.1.3 Current age (years) / ☐ / 2.1.9Misdiagnoses other / ☐
2.1.4 Individual who made diagnosis / ☐ / 2.1.10Dual diagnosis / ☐
2.1.5 Individual who made diagnosis (other) / ☐ / 2.1.11Other diagnoses / ☐
2.1.6 History leading to diagnosis / ☐
Individual with Angelman Syndrome Results (request all in this section ☐)
2.2.1 Genetic test for Angelman syndrome / ☐ / 2.2.3 Test result / ☐
2.2.2 Type of test performed / ☐

Module 3. History of Diagnosis and Results (request all in this module ☐)

Pneumonia / Respiratory(request all in this section ☐)
3.1.1 Ever had pneumonia / ☐ / 3.1.4 Severity of episodes / ☐
3.1.2 Pneumonia related to aspiration / ☐ / 3.1.5 Other respiratory problems / ☐
3.1.3 Number of episodes per year / ☐ / 3.1.6 Description of other respiratory problems / ☐
Strep Throat(request all in this section ☐)
3.2.1 Ever had strep throat / ☐ / 3.2.3 Severity of episodes / ☐
3.2.2 Number of episodes per year / ☐
Gastroesophageal Reflux (request all in this section ☐)
3.3.1 Ever had gastroesophageal reflux / ☐ / 3.3.8 Age in months when gastroesophageal reflux recurred / ☐
3.3.2 Age at diagnosis (years) / ☐
3.3.3 Age at diagnosis (months) / ☐ / 3.3.9 Severity of recurring episodes / ☐
3.3.4 Severity, if diagnosed / ☐ / 3.3.10 Medical treatment required, if recurring / ☐
3.3.5 Medical treatment required, if diagnosed / ☐ / 3.3.11 Surgical treatment required, if recurring / ☐
3.3.6 Surgical treatment required, if diagnosed / ☐ / 3.3.12 Age in years when gastroesophageal reflux resolved / ☐
3.3.7 Age in years when gastroesophageal reflux recurred (if recurring) / ☐ / 3.3.13 Age in months when gastroesophageal reflux resolved / ☐
Strep Throat(request all in this section ☐)
3.4.1 Ever had constipation / ☐ / 3.4.3 Management of constipation / ☐
3.4.2 Severity of episodes / ☐ / 3.4.4 If other, please specify / ☐
Vomiting with Feeds(request all in this section ☐)
3.5.1 Ever vomited with feeds / ☐ / 3.5.3 Surgical treatment required (if yes) / ☐
3.5.2 Medical treatment required (if yes) / ☐
Gagging(request all in this section ☐)
3.6.1 Ever experienced gagging / ☐ / 3.6.2 Situations when gagging occurs / ☐
Tight Heel Cords or Toe Walking(request all in this section ☐)
3.7.1 Ever had tight heel cords or toe walking / ☐ / 3.7.3 Tight heel cords/ toe walking recurring / ☐
3.7.2 Treatments used (if yes) / ☐

Module 3. Illnesses or Medical Problems (continued)

History of Diagnosis (request all in this section ☐)
3.8.1 Ever had scoliosis / ☐ / 3.8.4 Age at diagnosis (months) / ☐
3.8.2 Treatments used (if yes) / ☐ / 3.8.5 Age when bracing commenced (years) / ☐
3.8.3 Age at diagnosis (years) / ☐ / 3.8.6 Age when bracing commenced (months) / ☐
Dental Problems(request all in this section ☐)
3.9.1 Ever had dental problems / ☐ / 3.9.3 Other dental problems / ☐
3.9.2 Number of fillings / ☐
Obesity (request all in this section ☐)
3.10.1 Ever had obesity / ☐ / 3.10.8 Current weight in lb / ☐
3.10.2 Age of onset (years) / ☐ / 3.10.9 BMI (metric) / ☐
3.10.3 Age of onset (months) / ☐ / 3.10.10 BMI (imperial) / ☐
3.10.4 Current height in meters/metres / ☐ / 3.10.11 Activity level / ☐
3.10.5 Current height in feet (ft) / ☐ / 3.10.12 Food intake / ☐
3.10.6 Current height in inches (in) / ☐ / 3.10.13 Food seeking behaviours / ☐
3.10.7 Current weight in kg / ☐
Failure to Thrive(request all in this section ☐)
3.11.1 Ever had anorexia/ failure to thrive / ☐ / 3.11.5 Duration of failure to thrive (years) / ☐
3.11.2 Age of onset (years) / ☐ / 3.11.6 Duration (months) / ☐
3.11.3 Age of onset (months) / ☐ / 3.11.7 Duration (weeks) / ☐
3.11.4 Age of onset (weeks) / ☐
Tube Feeding(request all in this section ☐)
3.12.1 Individual tube fed / ☐ / 3.12.5 Duration tube fed (weeks) / ☐
3.12.2 Tube fed type / ☐ / 3.12.6 Reason for placement / ☐
3.12.3 Duration tube fed (years) / ☐ / 3.12.7 Method of tube feeding / ☐
3.12.4 Duration tube fed (months) / ☐ / 3.12.8 Description of complications / ☐
Eye Problems (request all in this section ☐)
3.13.1 Ever had strabismus / ☐ / 3.13.4 Treatment of recurrances / ☐
3.13.2 Treatments used / ☐ / 3.13.5 Ever had cortical visual impairment / ☐
3.13.3 Strabismus recurring / ☐ / 3.13.6 Other visual impairments / ☐

Module 3. Illnesses or Medical Problems (continued)

Hearing Problems (request all in this section ☐)
3.14.1 Ever had ear infections / ☐ / 3.14.3 Ever had hearing tested / ☐
3.14.2 Number of episodes per year / ☐ / 3.14.4 Hearing test result / ☐
Neurological Problems (request all in this section ☐)
3.15.1 Auditory processing disorders / ☐ / 3.15.4 Age of onset in months / ☐
3.15.2 Cortical myoclonus / ☐ / 3.15.5 Age of onset in weeks / ☐
3.15.3 Cortical myoclonus age of onset (years) / ☐ / 3.15.6 Severity (if diagnosed) / ☐
Other Medical Conditions(request all in this section ☐)
3.16.1 Other medical conditions / ☐ / 3.16.6 Severity / ☐
3.16.2 Name of condition / ☐ / 3.16.7 Episodes/ recurrences / ☐
3.16.3 Age of onset (years) / ☐ / 3.16.8 Frequency of episodes / ☐
3.16.4 Age of onset (months) / ☐ / 3.16.9 Other comments / ☐
3.16.5 Age of onset (weeks) / ☐

Module 4. Medical History (request all in this module ☐)

Allergies(request all in this section ☐)
4.1.1 Diagnosed allergies / ☐ / 4.1.3 Allergy details / ☐
4.1.2 Type of allergies / ☐
Intolerances(request all in this section ☐)
4.2.1 Intolerances / ☐ / 4.2.2 Intolerance details / ☐
Hospitalisations and Surgical Procedures (request all in this section ☐)
4.3.1 Ever been hospitalised / ☐ / 4.3.4 Number of surgeries / ☐
4.3.2 Had surgical procedures / ☐ / 4.3.5 Undergone anaesthesia / ☐
4.3.3 Number of surgeries / ☐ / 4.3.6 Number of anaesthesias / ☐
Details of Hospitalisation/ Surgery(request all in this section ☐)
4.4.1 Admission date (year only) / ☐ / 4.4.6 Reason for surgery / ☐
4.4.2 Approximate date if unknown (year only) / ☐ / 4.4.7 Reason for surgery - other / ☐
4.4.3 Age at admission (years) / ☐ / 4.4.8 Number of days in hospital / ☐
4.4.4 Age at admission (months) / ☐ / 4.4.9 Level of care / ☐
4.4.5 Hospitalisation reason / ☐

Module 4. Medical History (continued)

Seizure History(request all in this section ☐)
4.4.1 Ever experienced seizures / ☐ /

Module 5. Behaviour and Development (request all in this module ☐)

Allergies(request all in this section ☐)
5.1.1 Muscle tone / ☐ / 5.1.3 Muscle tone in limbs / ☐
5.1.2 Muscle tone in trunk / ☐
Developmental History(request all in this section ☐) / Frequency / Capability / Years / Months
5.2 Look at you clearly / ☐ / ☐ / ☐ / ☐
5.3 Sit up / ☐ / ☐ / ☐ / ☐
5.4 Crawl or scoot / ☐ / ☐ / ☐ / ☐
5.5 Walked (at least a few steps) / ☐ / ☐ / ☐ / ☐
5.6 Say at least one word / ☐ / ☐ / ☐ / ☐
5.7 Hold a rattle / ☐ / ☐ / ☐ / ☐
5.8 Hold a bottle / ☐ / ☐ / ☐ / ☐
5.9 Transfer items between hands / ☐ / ☐ / ☐ / ☐

NOTE: Frequency – how often the individual with AS performs this activity; Capability – difficulty associated with performing the activity; Years/ Months – age at which the individual first performed activity.

Current Development: General Impressions(request all in this section ☐)
5.10.1 Ability to learn / ☐ / 5.10.2 Loss of skills / ☐ /
Current Development: Speech and Language(request all in this section ☐)
5.11.1 Presence of expressive language / ☐ / 5.11.3 All forms of communication used / ☐
5.11.2 Best verbal communication / ☐ / 5.11.4 Best ability to respond to requests / ☐
Current Development: Communication(request all in this section ☐)
5.12.1 Ability to use spoken words / ☐ / 5.12.7 Ability to use eye tracking devices / ☐
5.12.2 Ability to use gestures / ☐ / 5.12.8 Ability to use low tech AAC / ☐
5.12.3 Ability to use signing / ☐ / 5.12.9 Ability to use mid tech AAC / ☐
5.12.4 Ability to use visual pictures / ☐ / 5.12.10 Ability to use high tech AAC / ☐
5.12.5 Ability to use formal PODD books / ☐ / 5.12.11 Preferred method of communication with caregiver / ☐
5.12.6 Ability to use iPad apps, picture to voice etc. / ☐

Module 5. Behaviour and Development (continued)

Gross Motor Function (request all in this section ☐)
5.13.1 Best mobility / ☐ / 5.13.4 Gait features differing from typical development / ☐
5.13.2 Use of mobility support / ☐ / 5.13.5 Gait progress / ☐
5.13.3 Gait in comparison to typically developing population / ☐
Gross Motor Function(request all in this section ☐) / Frequency / Capability / Years / Months
5.14 Rolling across the floor / ☐ / ☐ / ☐ / ☐
5.15 Crawling / ☐ / ☐ / ☐ / ☐
5.16 Shuffles or scoots when seated / ☐ / ☐ / ☐ / ☐
5.17 Standing / ☐ / ☐ / ☐ / ☐
5.18 Walking / ☐ / ☐ / ☐ / ☐
5.19 Running / ☐ / ☐ / ☐ / ☐
5.20 Climbing stairs / ☐ / ☐ / ☐ / ☐
5.21 Jumping / ☐ / ☐ / ☐ / ☐

Gross Motor Function(request all in this section ☐) / Frequency / Capability / Years / Months
5.22 Hold things (such as a stuffed toy) / ☐ / ☐ / ☐ / ☐
5.23 Point to indicate things / ☐ / ☐ / ☐ / ☐
5.24 Transfer things between their hands / ☐ / ☐ / ☐ / ☐
5.25 Hold a cup or tumbler and drink / ☐ / ☐ / ☐ / ☐
5.26 Hold a pencil and scribble / ☐ / ☐ / ☐ / ☐
5.27 Hold a pencil and draw / ☐ / ☐ / ☐ / ☐
5.28 Finger feed / ☐ / ☐ / ☐ / ☐
5.29 Hold a spoon and feed / ☐ / ☐ / ☐ / ☐
5.30 Use a fork / ☐ / ☐ / ☐ / ☐
5.31 Catch a large ball / ☐ / ☐ / ☐ / ☐
5.32 Catch a small ball / ☐ / ☐ / ☐ / ☐
5.33 Do up velcro / ☐ / ☐ / ☐ / ☐
5.34 Do up buttons or zippers / ☐ / ☐ / ☐ / ☐

Module 5. Behaviour and Development (continued)

Adaptive Skills - Dressing(request all in this section ☐) / Frequency / Capability / Years / Months
5.35Puts up hands to help dress / ☐ / ☐ / ☐ / ☐
5.36Removes simple clothes like pants or socks / ☐ / ☐ / ☐ / ☐
5.37Removes more complex clothes such as shirts / ☐ / ☐ / ☐ / ☐
5.38 Dresses self even if not always correct / ☐ / ☐ / ☐ / ☐
5.39Dresses self without assistance / ☐ / ☐ / ☐ / ☐
5.40 Chooses appropriate clothes (e.g. warm clothes if cold) / ☐ / ☐ / ☐ / ☐

Adaptive Skills – Toileting and Continence(request all in this section ☐) / Frequency / Capability / Years / Months
5.41 Individual is continent (toilet trained) / ☐ / ☐ / ☐ / ☐
5.42 Shows indicators of toileting behaviours / ☐ / ☐ / ☐ / ☐
5.43 Timed go to the toilet / ☐ / ☐ / ☐ / ☐
5.44 Individual indicates when he/ she wants to use toilet / ☐ / ☐ / ☐ / ☐
5.45 Individual is continent of stools / ☐ / ☐ / ☐ / ☐
5.46 Individual is continent of urine during day / ☐ / ☐ / ☐ / ☐
5.47 Individual is continent of urine during night / ☐ / ☐ / ☐ / ☐

Adaptive Skills - Eating (request all in this section ☐)
5.48.1 Textures or tastes individual does not like / ☐ / 5.48.2Examples of disliked textures / ☐
Adaptive Skills – Eating(request all in this section ☐) / Frequency / Capability / Years / Months
5.49Fussiness about food / ☐ / ☐ / ☐ / ☐
5.50Chews all textures / ☐ / ☐ / ☐ / ☐
5.51Feeds self using fingers or utensils / ☐ / ☐ / ☐ / ☐
5.52Needs support with feeding from a parent/ caregiver / ☐ / ☐ / ☐ / ☐
5.53Indicates when he/ she is full / ☐ / ☐ / ☐ / ☐
5.54Uses supplementation in forms of additional formulas / ☐ / ☐ / ☐ / ☐

Module 5. Behaviour and Development (continued)

Activities (request all in this section ☐)
5.55.1 Preferred activities / ☐ / 5.55.2 Description of other / ☐
Behavioural (request all in this section ☐)
5.56.1 Rating of problematic behaviour on a scale of 1 to 10 compared to age matched typical peers / ☐ / 5.56.17 Exhibits hyperactivity / ☐ /
5.56.2 Exhibits repetitive behaviours such as slapping the wall / ☐ / 5.56.18 Exhibits poor attention / ☐
5.56.3Exhibits focal hand movements / ☐ / 5.56.19 Exhibits good concentration on things they enjoy (e.g. iPad games) / ☐
5.56.4Exhibits whole body movements / ☐ / 5.56.20 Exhibits fascination with water / ☐
5.56.5Exhibits mouthing or chewing / ☐ / 5.56.21 Exhibits impulsivity (e.g. running on road) / ☐
5.56.6Exhibits agitation in new situations / ☐ / 5.56.22Exhibits frequent smiling at nothing in particular / ☐
5.56.7Exhibits fear of strangers / ☐ / 5.56.23 Exhibits frequent appropriate smiling / ☐
5.56.8 Exhibits socialisation with anyone / ☐ / 5.56.24 Exhibits spontaneous laughter at nothing in particular / ☐
5.56.9Exhibits fear of new situations / ☐ / 5.56.25 Exhibits night time laughter / ☐
5.56.10Exhibits anxious behaviours / ☐ / 5.56.26 Exhibits appropriate laughter / ☐
5.56.11 Description of anxious behaviours / ☐ / 5.56.27 Exhibits separation anxiety / ☐
5.56.12 Exhibits oppositional behaviours / ☐ / 5.56.28 Exhibits fear of being left at school or other care situations / ☐
5.56.13 Exhibits biting / ☐ / 5.56.29 Exhibits skin picking / ☐
5.56.14 Exhibits hair pulling / ☐ / 5.56.30 Exhibits head banging / ☐
5.56.15 Exhibits hitting / ☐ / 5.56.31 Exhibits self hitting / ☐
5.56.16 Exhibits grabbing / ☐ /

Module 6. Epilepsy (request all in this module ☐)

Febrile Seizures(request all in this section ☐)
6.1.1 Ever had febrile seizures / ☐ / 6.1.6 Seizure frequency when individual has a fever / ☐
6.1.2 Age of onset (years) / ☐ / 6.1.7 Number of seizures within timeframe / ☐
6.1.3 Age of onset (months) / ☐ / 6.1.8 Total number of seizures / ☐
6.1.4 Age of cessation (years) / ☐ / 6.1.9 Other comments on seizure type / ☐
6.1.5 Age of cessation (months) / ☐

Module 6. Epilepsy (continued)

Generalised Seizures(request all in this section ☐)
6.2.1 Ever had generalised seizures / ☐ / 6.2.7 Number of seizures within timeframe / ☐
6.2.2 Age of onset (years) / ☐ / 6.2.8 Seizure triggers / ☐
6.2.3 Age of onset (months) / ☐ / 6.2.9 Other comments on seizure triggers / ☐
6.2.4 Age of cessation (years) / ☐ / 6.2.10 Total number of seizures / ☐
6.2.5 Age of cessation (months) / ☐ / 6.2.11 Other comments on seizure type / ☐
6.2.6 Seizure frequency / ☐
Tonic-Clonic Seizures(request all in this section ☐)
6.3.1 Ever had tonic-clonic seizures / ☐ / 6.3.7 Number of seizures within timeframe / ☐
6.3.2 Age of onset (years) / ☐ / 6.3.8 Seizure triggers / ☐
6.3.3 Age of onset (months) / ☐ / 6.3.9 Other comments on seizure triggers / ☐
6.3.4 Age of cessation (years) / ☐ / 6.3.10 Total number of seizures / ☐
6.3.5 Age of cessation (months) / ☐ / 6.3.11 Other comments on seizure type / ☐
6.3.6 Seizure frequency / ☐
Absence Seizures(request all in this section ☐)
6.4.1 Ever had absence seizures / ☐ / 6.4.7 Number of seizures within timeframe / ☐
6.4.2 Age of onset (years) / ☐ / 6.4.8 Seizure triggers / ☐
6.4.3 Age of onset (months) / ☐ / 6.4.9 Other comments on seizure triggers / ☐
6.4.4 Age of cessation (years) / ☐ / 6.4.10 Total number of seizures / ☐
6.4.5 Age of cessation (months) / ☐ / 6.4.11 Other comments on seizure type / ☐
6.4.6 Seizure frequency / ☐
Typical Absence Seizures(request all in this section ☐)
6.5.1 Ever had typical absence seizures / ☐ / 6.5.7 Number of seizures within timeframe / ☐
6.5.2 Age of onset (years) / ☐ / 6.5.8 Seizure triggers / ☐
6.5.3 Age of onset (months) / ☐ / 6.5.9 Other comments on seizure triggers / ☐
6.5.4 Age of cessation (years) / ☐ / 6.5.10 Total number of seizures / ☐
6.5.5 Age of cessation (months) / ☐ / 6.5.11 Other comments on seizure type / ☐
6.5.6 Seizure frequency / ☐

Module 6. Epilepsy (continued)

Atypical Absence Seizures(request all in this section ☐)
6.6.1 Ever had atypical absence seizures / ☐ / 6.6.7 Number of seizures within timeframe / ☐
6.6.2 Age of onset (years) / ☐ / 6.6.8 Seizure triggers / ☐
6.6.3 Age of onset (months) / ☐ / 6.6.9 Other comments on seizure triggers / ☐
6.6.4 Age of cessation (years) / ☐ / 6.6.10 Total number of seizures / ☐
6.6.5 Age of cessation (months) / ☐ / 6.6.11 Other comments on seizure type / ☐
6.6.6 Seizure frequency / ☐
Myoclonic Absence Seizures(request all in this section ☐)
6.7.1 Ever had myoclonic absence seizures / ☐ / 6.7.7 Number of seizures within timeframe / ☐
6.7.2 Age of onset (years) / ☐ / 6.7.8 Seizure triggers / ☐
6.7.3 Age of onset (months) / ☐ / 6.7.9 Other comments on seizure triggers / ☐
6.7.4 Age of cessation (years) / ☐ / 6.7.10 Total number of seizures / ☐
6.7.5 Age of cessation (months) / ☐ / 6.7.11 Other comments on seizure type / ☐
6.7.6 Seizure frequency / ☐
Eyelid Myoclonia Absence Seizures(request all in this section ☐)
6.8.1 Ever had eyelid myoclonia absence seizures / ☐ / 6.8.7 Number of seizures within timeframe / ☐
6.8.2 Age of onset (years) / ☐ / 6.8.8 Seizure triggers / ☐
6.8.3 Age of onset (months) / ☐ / 6.8.9 Other comments on seizure triggers / ☐
6.8.4 Age of cessation (years) / ☐ / 6.8.10 Total number of seizures / ☐
6.8.5 Age of cessation (months) / ☐ / 6.8.11 Other comments on seizure type / ☐
6.8.6 Seizure frequency / ☐
Myoclonic Seizures(request all in this section ☐)
6.9.1 Ever had myoclonia seizures / ☐ / 6.9.7 Number of seizures within timeframe / ☐
6.9.2 Age of onset (years) / ☐ / 6.9.8 Seizure triggers / ☐
6.9.3 Age of onset (months) / ☐ / 6.9.9 Other comments on seizure triggers / ☐
6.9.4 Age of cessation (years) / ☐ / 6.9.10 Total number of seizures / ☐
6.9.5 Age of cessation (months) / ☐ / 6.9.11 Other comments on seizure type / ☐
6.9.6 Seizure frequency / ☐

Module 6. Epilepsy (continued)

Myoclonic Atonic Seizures(request all in this section ☐)
6.10.1 Ever had myoclonia atonic seizures / ☐ / 6.10.7 Number of seizures within timeframe / ☐
6.10.2 Age of onset (years) / ☐ / 6.10.8 Seizure triggers / ☐
6.10.3 Age of onset (months) / ☐ / 6.10.9 Other comments on seizure triggers / ☐
6.10.4 Age of cessation (years) / ☐ / 6.10.10 Total number of seizures / ☐
6.10.5 Age of cessation (months) / ☐ / 6.10.11 Other comments on seizure type / ☐
6.10.6 Seizure frequency / ☐
Clonic Seizures(request all in this section ☐)
6.11.1 Ever had clonic seizures / ☐ / 6.11.7 Number of seizures within timeframe / ☐
6.11.2 Age of onset (years) / ☐ / 6.11.8 Seizure triggers / ☐
6.11.3 Age of onset (months) / ☐ / 6.11.9 Other comments on seizure triggers / ☐
6.11.4 Age of cessation (years) / ☐ / 6.11.10 Total number of seizures / ☐
6.11.5 Age of cessation (months) / ☐ / 6.11.11 Other comments on seizure type / ☐
6.11.6 Seizure frequency / ☐
Tonic Seizures(request all in this section ☐)
6.12.1 Ever had tonic seizures / ☐ / 6.12.7 Number of seizures within timeframe / ☐
6.12.2 Age of onset (years) / ☐ / 6.12.8 Seizure triggers / ☐
6.12.3 Age of onset (months) / ☐ / 6.12.9 Other comments on seizure triggers / ☐
6.12.4 Age of cessation (years) / ☐ / 6.12.10 Total number of seizures / ☐
6.12.5 Age of cessation (months) / ☐ / 6.12.11 Other comments on seizure type / ☐
6.12.6 Seizure frequency / ☐
Atonic Seizures(request all in this section ☐)
6.13.1 Ever had atonic seizures / ☐ / 6.13.7 Number of seizures within timeframe / ☐
6.13.2 Age of onset (years) / ☐ / 6.13.8 Seizure triggers / ☐
6.13.3 Age of onset (months) / ☐ / 6.13.9 Other comments on seizure triggers / ☐
6.13.4 Age of cessation (years) / ☐ / 6.13.10 Total number of seizures / ☐
6.13.5 Age of cessation (months) / ☐ / 6.13.11 Other comments on seizure type / ☐
6.13.6 Seizure frequency / ☐

Module 6. Epilepsy (continued)

Focal Seizures(request all in this section ☐)
6.14.1 Ever had focal seizures / ☐ / 6.14.7 Number of seizures within timeframe / ☐
6.14.2 Age of onset (years) / ☐ / 6.14.8 Seizure triggers / ☐
6.14.3 Age of onset (months) / ☐ / 6.14.9 Other comments on seizure triggers / ☐
6.14.4 Age of cessation (years) / ☐ / 6.14.10 Total number of seizures / ☐
6.14.5 Age of cessation (months) / ☐ / 6.14.11 Other comments on seizure type / ☐
6.14.6 Seizure frequency / ☐
Spasms(request all in this section ☐)
6.15.1 Ever had spasms / ☐ / 6.15.7 Number of seizures within timeframe / ☐
6.15.2 Age of onset (years) / ☐ / 6.15.8 Seizure triggers / ☐
6.15.3 Age of onset (months) / ☐ / 6.15.9 Other comments on seizure triggers / ☐
6.15.4 Age of cessation (years) / ☐ / 6.15.10 Total number of seizures / ☐
6.15.5 Age of cessation (months) / ☐ / 6.15.11 Other comments on seizure type / ☐
6.15.6 Seizure frequency / ☐
Unknown/ Undiagnosed Seizures(request all in this section ☐)
6.16.1 Ever had unknown/ undiagnosed seizures / ☐ / 6.16.7 Number of seizures within timeframe / ☐
6.16.2 Age of onset (years) / ☐ / 6.16.8 Seizure triggers / ☐
6.16.3 Age of onset (months) / ☐ / 6.16.9 Other comments on seizure triggers / ☐
6.16.4 Age of cessation (years) / ☐ / 6.16.10 Total number of seizures / ☐
6.16.5 Age of cessation (months) / ☐ / 6.16.11 Other comments on seizure type / ☐
6.16.6 Seizure frequency / ☐
Convulsive Status Seizures(request all in this section ☐)
6.17.1 Ever had convulsive status seizures / ☐ / 6.17.7 Number of seizures within timeframe / ☐
6.17.2 Age of onset (years) / ☐ / 6.17.8 Seizure triggers / ☐
6.17.3 Age of onset (months) / ☐ / 6.17.9 Other comments on seizure triggers / ☐
6.17.4 Age of cessation (years) / ☐ / 6.17.10 Total number of seizures / ☐
6.17.5 Age of cessation (months) / ☐ / 6.17.11 Other comments on seizure type / ☐
6.17.6 Seizure frequency / ☐

Module 6. Epilepsy (continued)