Questionnaire to collect information on CP register/survey ...

SURVEILLANCE OF CEREBRAL PALSY IN EUROPE - SCPE

Questionnaire to collect

information on CP register/survey description

Version 1.0 September 2020

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Surveillance of Cerebral Palsy in Europe Questionnaire to collect information on CP Register/Survey description

SCPE GuideQuestionnaire to collect information on CP Register/Survey description, Version 1.0, September 2020

SCPE Questionnaire to collect information on CP register/survey description, Version 1.0, September 2020 Document prepared by Mary Jane Platt, Els Ortibus, Agnieszka Kinsner-Ovaskainen (based on the Guidelines New applicants: site visit - Version 2.0 December 2019) Last revision: [date] Validated by [Name], [date]

Aim of the questionnaire:

To update relevant, administrate details from the SCPE member register

To ensure that the SCPE member register still fulfills the criteria for membership and is able to provide

accurate and complete data on children with CP in the geographic area covered by the registry to JRC-SCPE

Central Registry

To identify areas where the SCPE member registry may benefit from the help and support of the Management

Committee and the Central Registry to develop and improve

To be disseminated to:

– All current SCPE member registries to update Central Register’s records

– Website (private part)



Scope

The JRC-SCPE Management Committee wishes to regularly update the description of all SCPE member registries or

surveys that collect data on children with cerebral palsy (CP) and submit them timely to the JRC-SCPE Central Database.

The questionnaire is intended to:

document whether a member register or survey on cerebral palsy still fulfills the requirements of the SCPE

network, and whether their data comply with SCPE standards (see below);

understand how the registry operates, and identify any areas of concerns or other major difficulties, providing

support where possible.

The questionnaire will be distributed via email to all SCPE members and the feedback collected by the Central Registry at the email address: [email protected] by the deadline required.

SCPE Membership criteria:

Any European register or survey of children with CP can be a type (a) SCPE partner if it fulfills all of the following

criteria:

covers a geographically defined area, with a birth rate of at least 3,000 births per year;

uses multiple sources of ascertainment;

can comply with the SCPE requirements in terms of data collection, classification of CP, and quality assurance

measures;

can transmit the relevant data (cases and denominators) to the SCPE common database in a timely manner.

Feedback

The JRC-SCPE Management Committee will evaluate the responses to the questionnaire and all registries will be

informed on the conclusions. Any concerns will be discussed between the SCPE registry, a member of the Management

Committee and the JRC-SCPE Central Registry.

This documentation will be kept by the JRC-SCPE Central Registry and made available also on the SCPE website

(password protected members area). Where relevant, the summary index card will be updated on the website according

to the information provided in this questionnaire.

mailto:[email protected]



CP Register/Survey description questionnaire Date: 01/10/2020

Completed by: Sandra Julsen Hollung

Name of Centre: Cerebral Palsy Registry of Norway

SCPE centre number: C15

This report includes three parts that all need to be documented:

A. Administrative information

B. Scientific and technical information

- Section I: Aim and objectives of the register/survey

- Section II: Methods of case ascertainment

- Section III: Organisation and database management

- Section IV: Public health and research plans

-

C. Index card summary

Please, take the time to fill in the questionnaire carefully and thoroughly. Answer every question possible. Please feel

free to add lines where necessary.

The completed form is to be returned via email to [email protected].

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A. Administrative information Name of the CP register/survey (plus acronym if any): Cerebral Palsy Registry of Norway (CPRN) Date CP register established: 2001 Professional in charge:

Name: Guro L. Andersen / Sandra Julsen Hollung Speciality: Pediatrician / Health Informatics Specialist & Researcher Address: PB 2168 3103 Tønsberg Norway Phone: +47 97070158 / +47 91576563 E-mail: [email protected] / [email protected]

Legal entity1 and Management structure (parent body, hospital department ...): Vestfold Hospital Trust Source of funding (including duration and approximate annual amount), if applicable (association/charity/private, university, research, other): Norwegian Directorate of Health – Norwegian Advisory Unit for Medical Quality Registries - South West Health Authority Does your register comply with the current GDPR regulations in your country?

☒ Yes (please outline requirements and give date(s) of approval (including copy of approval))

Click here to enter text.

☐ No (please explain)

Click here to enter text.

Location of the register (address, number of rooms, ...) Vestfold Hospital Trust, CPRN, PB 2168, 3103 Tønsberg (2 offices in Habilitation Center)

1 The legal entity is the organisation with whom the JRC-SCPE Collaboration agreement will be signed





B. Scientific and technical information

SECTION I: Aim and objectives of the register

I-1. Please outline the aim, purpose and objectives of the register

* The CPRN and Cerebral Palsy Follow-Up Program of Norway (CPOP) have common aims/objectives (as well as

consent forms, board, database) AIM: Provide research-based knowledge about the causes and prevalence of CP, as well

as health, function, participation, quality of life and treatment of people with CP. This, through systematic monitoring,

follow-up, analysis and network building in order to: • contribute to better and equal treatment nationwide • contribute

to competence and quality development in the specialist health service and municipal services • contribute to increased

knowledge, participation and coping for people with CP and their relatives • contribute to good quality maternity care

and neonatal medicine

I-2. Case definition

In addition to those with CP, does the registry include cases with other types of impairment and disability

(e.g. Autism, congenital anomalies): ☐YES ☒NO

If yes, please give details: Click here to enter text.

Children with CP

Current definition of CP used: Please specify the definition and its published reference if available SCPE guidelines At what age (in years) is the child with CP registered as a case? At diagnosis (age 0-4 years), at age 5 and ages 15-17 (all residents; regardless of place of birth)

Does your register include children with acquired or post neonatal cause of CP: ☒YES ☐NO If yes, please specify lower and upper age limit (days, weeks, months or years) SCPE guidelines

Do you use written guidelines for inclusion and/or exclusion criteria? ☒YES ☐NO

SCPE guidelines First birth year of children with CP registered 1996 Most recent birth year of children with CP registered 2020 (to present)

Have there been any significant changes in definition, inclusion, or exclusion criteria since your register

was established? ☐YES ☒NO

Are there any birth years missing? ☐YES ☒NO

If yes, which years are missing?: Click here to enter text.

Average number of cases per year: This has changed over time; avg. 2009-2013 = 130 (born in Norway + born

abroad + postneonatal (PN); born Norway + PN = 116; born Norway (no PN) = 112

Total number of children with CP in the register (or survey): 2900



I-3. Description of the population covered

Describe the geographic area covered Norway (national) What is the total number of inhabitants in the area covered by the register? 5 500 000 What is the annual number of livebirths in the area covered by the register? Avg. 2009-2013 = 61 500 How many maternity units (hospitals or similar where women give birth) are there in the area covered by the register? 48 How many neonatal intensive care units are there in the area covered by the register? 21

Please give your definition of stillbirth: * See Medical Birth Registry of Norway felt list in Annex II for multiple definitions.

Please give your definition of neonatal mortality: * See Medical Birth Registry of Norway felt list in Annex II for multiple definitions.

Are you able to any of the following information on all infants born in your area2?

o birth weight ☒YES ☐NO

o gestational age ☒YES ☐NO

o babies admitted to neonatal intensive care ☒YES ☐NO

o multiple births ☒YES ☐NO

Please provide full details in Annex 1.

* We connect to the Medical Birth Registry of Norway annually (also Norwegian Patient Registry, Neonatal Intensive Registry, among many others) How confident are you to being able to identify and collect data on all children with CP who were born and/or reside in your geographically defined area, in accordance with the SCPE criteria? 99.9%

If you are not sure that you have information on almost all children with CP who live in the geographical area covered by the register, please explain why this might be, and what information may be missing. N/A

2 Usually grouped into birthweight/ gestational age groups



Further information about your geographical area (if available):

Estimates of the number of residents “moving in” the area each year, and “moving out” of the area each year, and where does this information come from 2018 immigration = 58 192 2018 emigration = 36 843 from Statistics Norway (+ deaths & births) Urban/Rural ratio in the area (if possible. Please give some definition of what is called urban and rural in the demographic statistics of your country: 80% live in urban settlements Urban settlement: A cluster of buildings shall be registered as an urban settlement if it is inhabited by at least 200 persons. The distance between the buildings should normally not exceed 50 metres, but for some space-demanding building categories - such as apartment buildings, industrial buildings, offices / commercial buildings, schools, hospitals etc. - the distance can be increased to 200 metres. Adjacent built-up and constructed areas, such as parks, sports facilities and industrial areas, should be part of the urban settlement. Building clusters with at least 5 commercial buildings or 5 residential buildings are included up to a distance of 400 metres from the urban settlement core. Urban settlements are geographical areas with dynamic boundaries. Thus the number of urban settlements and their boundaries will change over time, depending on construction activity and changes of resident population. The delimitation of the urban settlements is independent of the administrative boundaries. A standard classification of the urban settlements is: 200 - 1 999 residents 2 000 - 19 999 residents 20 000 - 99 999 residents 100 000 or more residents Termination of pregnancy rate per 1000 births in the area (if known, specify the year): Abortion Registry of Norway = under 10 per 1000 in 2019



SECTION II: Methods of case ascertainment

II-1. Briefly outline how you IDENTIFY in your locality children with CP who may be eligible for inclusion in the register e.g. sources of identification of the cases, including:

Medical sources (e.g.: neonatology database, neurologic outpatient clinic, primary health care service): 21 habilitation centers in Norway (specialized healthcare services); each has pediatrician, physical therapist, occupation therapist, special teachers, among others acquire a signed consent form – and fill out registrations forms based-on a consultation. In addition, we connect to the Norwegian Patient Registry (all consultations in specialized healthcare services) every 3 years to make sure all cases are in the CP-registry. (Those cases not in the CP-registry are validated by the pediatricians at the 21 habilitation centers to have/not have CP, then a consent form is collected accordingly). Social sources (e.g.: early care and disability assessment) Educational sources (e.g.: specialised school, public school with special resources) Do you use a passive form of reporting (await voluntary reporting) or an active form of reporting (regular contact or case searches), or both? Active informed consent

II-2. Briefly outline how you CONFIRM whether a child meets the criteria for inclusion in your register

Who decides whether a child is eligible for inclusion in the register database? Please give the skill/background of this(ese) person(s) and if the decision about inclusion is taken after examination of the child or based on medical records information A paediatrician in one of the 21 habilitation services is responsible for the diagnosis of CP, using clinical findings during examination (& follow-up consultations).

Do you (mainly) abstract data from the child’s records, or request information for the clinicians who care for them, or both? Clinicians, our consent also allows to view patient’s medical journal to supplement/validate data

Following your usual procedures for identifying and collecting information on a case, how often do you require additional information before confirming the SCPE eligibility criteria for including the case are met? (e.g.: going back to the medical records of a hospital or to the notes of a paediatrician or family doctor in charge of the child)

☐ Always (for each case)

☐ Often (in more than half of the cases)

☐ Rarely (in less than half of the cases)

☒ Never * Because we also have the CPOP (motor function/hip & back x-ray follow-up x 2 or x 1 time

per year or every other year based on GMFCS level, starting from age 0, we also have some children with

suspicion of CP (early diagnosis), and later removed (confirmed at age 5).

II-2. Follow up procedure

Following registration of a case on your register, do you follow-up (either routinely or sporadically) children with CP?

☒YES ☐NO If yes, please describe, including how you maintain the ‘audit trail'3 CPRN registers at 3 points in time: at diagnosis (0-4 years old), 5 years old & 15-17 years old. CPOP registers motor function, hip & back x-rays x 2 or x 1 time per year or every other year based on GMFCS level. An adult CP-registry/follow-up program is now being established to continue those that are now of adult age. Vital status: do you use information from death certificates?

☒YES * ☒NO If yes, up to what age and how do you use this information? * We can connect to the Norwegian Death registry

3 By which is meant, do you have a systematic way of recording what and when new or changed information is added to a child’s record after the registration point.



II-3. Describing the child with CP (data collection form used)

Briefly outline how data on eligible children is collected

Please explain: Who completes the data form? How the data are collected, e.g. data extracted from medical records (by whom?), or data notified by clinicians (during routine clinical care?) See II-1

Have you used the same form since the register started? ☐YES ☒NO

Please send one copy of the form used at present time. If it is a non-English version, would you please send a copy of a translated version? *Complete felt list of CPRN 5-Year Registration is available in English in Annex II.

Do you use a form which contains all the items recommended in the SCPE Data Collection Form?

☒YES ☐NO

Please provide full details in Annex 2

Which functional grading do you use?

o None ☐YES ☐NO

o GMFCS, ☒YES ☐NO

o MACS ☒YES ☐NO

o BFMF ☒YES ☐NO

o Other functional grading (if so, please describe)

Age 5 Registration: General Movements Assessment (GMA), Hammersmith Infant Neurological Examination

(HINE), EDACS, Pain assessment, national cognition test scores: BRIEF, VMI, WPPSI, WISC, Vineland, CFCS,

Viking Speech Scale, Language testing: Reynell, ITPA, Weschler, spasticity treatments, Orthopedic surgery

treatments + CPOP: physical therapy assessment, occupational therapy assessment, hip x-ray assessment

and back x-ray assessment with multiple international function grading classification tools.

For each child with CP registered, please list all the associated impairments recorded in your register and any associated functional grading system (e.g. Vision, hearing, seizures, gastrotomy)? Age 5 Registration: Epilepsy, use of antiepileptic, breathing, vision, hearing nutrition, pain, sleeping, cognition/learning disabilities, language & communication, use of Augmentative & Alternative Communication (AAC), Spasticity treatments (Botox, ITB, oral baclofen), orthopedic surgery + CPOP …

Do you collect any information on neuroimaging? ☒YES ☐NO

Please tick all that apply

☒ neonatal period

☒ post neonatal period4

☐ ultrasound

☒ MRI

How is this information coded/ classified, and by whom? SCPE MRICS on registration forms filled-out by pediatrician, national radiologists association informed of MRICS to write on cerebral MRI findings reports.

Do you collect/ record any other information on the child which is not included on the SCPE-DCF form? (such as social status of the parents, etiological factors, TREATMENTS …). Pease describe We can connect to Statistics Norway, among several other national health registries & medical quality

registries.

4 For MRI/CT scan, postneonatal period is after 28 days after the expected date of confinement (i.e. ‘adjusted’ age)

https://eu-rd-platform.jrc.ec.europa.eu/sites/default/files/SCPE-DCF-October-2018.pdf



II-4. Completeness and quality of the information collected

Briefly outline procedures for ensuring all eligible cases in the geographical area are identified (completeness of ascertainment of cases). For example: Do you use any validation procedure for testing the completeness of the ascertainment? If yes, please describe with details. Validate every 3 years by connecting to Norwegian Patient Registry – all patients with CP code not in CP-registry are validated by pediatricians in the 21 local habilitations centers to have CP / not CP. Through this continual process very few not in CP-registry. Briefly outline procedures to assess the completeness of reported cases (completeness of record) See above Please provide details of % of missing data for each variable in Annex 2

Do you regularly check the accuracy and validity of your data? ☒YES ☐NO If yes, please describe how and for which variables By connecting to other national health registries. How many different sources of information do you use regularly? If available, please give the mean number of sources per child registered (specify the covered time period) Many national health and national medical quality registries.

II-5. Confidentiality

Do you have an ‘opt in’ or an ‘opt out’ system for parental consent:

☒ Opt In

☐ Opt out

☐ Other

Please give approximate refusal or ‘opt out’ rate for the last year of registration:

1 child (recent refugee, not born in Norway)

If ‘Opt In’, do you require written parental consent before including the case? ☒YES ☐NO If yes, from both parents? 1 parent

Do you ask the parent for information on the child? If yes, which information? Have PROM/PREM forms at age 15-17 years.

Briefly outline the methods used for data protection (paper sheets with names, computer protection, access to the database). If available, please attach register policy on this. National approved electronic registration system.



SECTION III: Organisation and database management

III-1. Material, computer, software used to run your register

PC or Mac: 2 PC, 2 laptop, 2 iPad

Database software: eReg (each hospital has local registration database, when a registration form is signed – an XML

copy is sent to national eReg database (both CPRN + CPOP)

Statistical software: SPSS, STATA, R (RStudio + RShiny), PowerBi

III-2. Manpower (skill, person-months or eventually hours per week) Please complete this table. Include all person-time contributions, whatever their funding.

Manpower

Hours per week

current

Hours per week

«ideal»

Clinician 16

Health Informatics Specialist/Researcher 40

Epidemiologists (Professor Torstein Vik) When needed

Statisticians (Professor Medical Statistics) When needed

Computer engineers (Oslo university IT

architect)

16 +

Non-physician investigators

Clinical assistant

Other, describe



SECTION IV: Public health and research plans

Do you:

provide input toward local Public Health authority or similar institution?

☒YES ☐NO

If yes, please specify: All respective Norwegian health authorities / Patient organizations

provide feedback to clinicians contributing to the register (e.g. annual meeting)?

☒YES ☐NO

If yes, please specify: Annual meeting, reports and on-line access to updated statistics

have links with any other existing registers in your region/country (e.g. congenital anomaly

register)?

☒YES ☐NO

If yes, please specify: Multiple national health registries and medical quality registries (too many to list

here)

Briefly outline any current or recent research studies: CPPain: The CPPain-program is an international research collaboration between Norway, Sweden, Finland, USA and Canada. The program is headed from Telemark Hospital Trust and Vestfold Hospital Trust in Norway. The main idea behind the CPPain-program is that children and adolescents with CP and their parents together have the best knowledge of the child or adolescent’s pain burden and need to be an integrated part of describing the problem, devising and implementing solutions, and evaluate their effect in close collaboration with researchers, health care personnel and professional caretakers. The program was launched in January 2019 and will run for 6 years. We start with a mapping of today’s situation, which includes a survey (The CPPain-survey) and interviews with children, adolescents, parents and health care personnel. From what we learn, we will then develop, implement and evaluate an improvement project in close collaboration with children and adolescents with CP and their parents. https://www.sthf.no/helsefaglig/forskning-og-innovasjon/forskningsprosjekter/cppain-programmet/the-cppain-program#the-cppain-program CP-North: Living life with cerebral palsy in the Nordic countries is a research project involving six Nordic countries. Through interdisciplinary research based on different registers we aim to explore how living with CP affects health, quality of life, education, labor market outcomes, socioeconomic status, and mortality throughout the lifespan of the individual with CP and his/her family. We will also investigate if these effects differ between genders and within and across the Nordic countries (Sweden, Norway, Denmark, Iceland, Finland and Scotland). The data in this study will be based on one of the largest databases concerning information on children with CP and their families throughout the lifespan, and address a large evidence gap. By this Nordic register-based collaboration we intend to significantly increase the knowledge of how persons with CP, a rare, yet highly complex and lifelong disability, are affected at the individual, family, and societal level. The new information gained can be used to guide individual country’s practices and policies by providing much needed evidence https://www.arcada.fi/en/research/project/cp-north

Please list any publications from your register, or using data from your register: Complete list available here: https://www.siv.no/helsefaglig/cp-registeret#publikasjoner

Any other comments or explanations are welcome: CPRN works in close cooperation with the Norwegian University of Science & Technology – CP research group. CPOP to the Oslo University Hospital / Oslo University

https://www.sthf.no/helsefaglig/forskning-og-innovasjon/forskningsprosjekter/cppain-programmet/the-cppain-program#the-cppain-program

https://www.sthf.no/helsefaglig/forskning-og-innovasjon/forskningsprosjekter/cppain-programmet/the-cppain-program#the-cppain-program

https://www.arcada.fi/en/research/project/cp-north

https://www.siv.no/helsefaglig/cp-registeret#publikasjoner



C – Index card summary

(1 page)

Administrative information:

Name of CP register (in English AND country language): Cerebral Palsy Registry of Norway / Cerebral

pareseregisteret i Norge

Logo, if any: please attach an image file to this questionnaire

Website, if any: www.siv.no/cprn

Year register started: 2001 (first birth cohort 1996)

Address of the register: Vestfold Hospital Trust, CPRN, PB 2168, 3103 Tønsberg NORWAY

Name, speciality, address of the scientific professional in charge (phone, e-mail): Guro L. Andersen, MD, PhD

[email protected] and Sandra Julsen Hollung, MSc, PhD [email protected]

Name, status, address of the administrative professional in charge (phone, e-mail): Sandra Julsen Hollung, MSc,

PhD [email protected]

Characteristics of the register:

Adverse health event or disability registered (other than CP): Click here to enter text.

Informed consent (yes or no): yes

Registration point(s) of time: at diagnosis (age 0-4), 5 years and 15-17 years

Geographic area covered (% of the country): Norway (100%)

Population in the area: 5 500 000

Number of CP cases per year: 130 per residents; 112 per live births

Number of livebirths per year: 61 500

Principal data sources: 21 habilitation and pediatric departments nationwide, Cerebral Palsy Follow-Up Program

(CPOP), Medical Birth Registry of Norway and Norwegian Patient Registry

http://www.siv.no/cprn






Annex 1. Population-based denominators requested Please fill in the table below regarding the two last birth years available in your register, and specify which you are reporting on. Birth years: 1967 – today * Medical Birth Registry of Norway

Available

If available, is it for

Yes No total births (TB) or live births (LB)*

Total births X

Delivery mode X Both

Delivery mode per BW X Both

Delivery mode per GA X Both

Place of birth X Both

Maternal age X Both

Parity X Both

Neonatal deaths per BW X

Neonatal deaths per GA X

Multiple neonatal deaths per BW X

Multiple Neonatal deaths per GA X

Live births per BW X

Live births per GA X

Multiple live births per BW X

Multiple live births per GA X

* Please complete the column here with TB, LB, or TB & LB for the 2d to 7th row only



Annex 2. Availability for the items of the SCPE guideline

Please fill the table below regarding the two last birth years available in your register, and specify which you are reporting on. Birth years: We have up to birth year 2020, so the last birth years after 5 years of age = 2014-2015 * MBRN = Medical Birth Registry of Norway

Item Yes No % missing

if available

ID X

BIRTH_DA X

REGIST_DATE X

BIRTH_RESID X

REGIST_RESID X

STATUS X

DEATH_DATE X

DEATH_AGE X

SOURCES X

SEX X

BW X MBRN

GA X MBRN

MULT_BIRTH X MBRN

BO X MBRN

MOTHER_AGE X MBRN

PARITY X MBRN

DELIVERY_MODE X MBRN

BIRTH_PLACE X MBRN

(definitions do not match SCPE)

CP_TYPE X

SPAS_TYPE X

UNI_TYPE X

BFMF X

MACS X

GMFCS X

WALKING X

VIKING X

VIKING-AGE X

INTEL_IMP X

IQ_TEST X

AGE_IQ X

VI X

VI_SEVER X

HI X

HI_SEVER X

EPILEPSIA X

EPIL_ACT X

AGEON_EPIL X

OSTOMY X

OSTOMY_AGE X

SYNDR X

SYNDR_COD1 X

SYNDR_COD2 X

OTHER_CA X

OTHER_CA _COD X

OTHER_CA _TXT X



Item Yes No % missing

if available

BRAIN_MALF X

BRAIN_CODE X

BRAIN_TXT X

DOCA X

POSTNEON X

POSTN_CODE1 X

POSTN_CODE2 X

AGE_POSTN X

NCU X MBRN

VENT_NCU X MBRN

APGAR5 X MBRN

CONVULS X MBRN

IMAGING X

POST_IMAG X

MRI_CT_AGE X

MRI_RESULT X

MRI_CT_R_TXT X

MRI_SIDE X

NEONI X

NEONI_AGE X

NEONI_RESULT X

NEONI_R_TXT X

NEONI_SIDE X

Field list: CPRN 5-year registration (eReg v 0.100)

Full Variable Name Field Name Field Type Values

Born in Norway? Single Option

1; Yes

2, No

777; Do not know

Which country was the child born in?

Code List

Mother tongue: Code List

Date of this clinical examination: Date

Height (cm): Numeric

Weight (kg): Numeric

Head circumference (cm): Numeric

CP diagnosis: Code List

4; G80.0 Quadriplegia

3; G80.1 Diplegia

1; G80.2 Hemiplegia RIGHT

2; G80.2 Hemiplegia LEFT

5; G80.3 Choreoathetose

6; G80.3 Dystonia

7; G80.4 Ataxia

8; G80.8 Other specified

9; G80.9 Unspecified

Age at first suspicion of CP diagnosis? (month)

Numeric

Was evaluated with General Movements Assessment (GMA)?

Single Option

1; Yes

2, No

777; Do not know

Was assessed with Hammersmith Infant Neurological Examination (HINE)?

Single Option

1; Yes

2, No

777; Do not know

Age at diagnosis? (month) Numeric

Postneonatal CP? Single Option

1; Yes

2, No

777; Do not know

Postneonatal cause ICD-10 code? Code List

Age at postnatal cause? (month) Numeric



Have/have had epilepsy? Single Option

1; Yes

2, No

777; Do not know

Use antiepileptics? Single Option

1; Yes

2, No

777; Do not know

Problems with slime/shortness of breath?

Single Option

1; Yes

2, No

777; Do not know

Single Option

1; Yes

2, No

777; Do not know

Single Option

1; Yes

2, No

777; Do not know

Single Option

1; Yes

2, No

777; Do not know

Single Option

1; Yes

2, No

777; Do not know

Used antibiotics against respiratory infection(s) in the last year?

Single Option

1; Yes

2, No

777; Do not know

How many times? Code List

1; 0-1 time

2; 2-4 times

3;> 4 times

777; Do not know

Have a congenital brain malformation(s)?

Single Option

1; Yes

2, No

777; Do not know

Which ICD-10 code - brain Code List



formation(s)?

Have other congenital malformations?

Single Option

1; Yes

2, No

777; Do not know

Which ICD-10 code - other congenital malformations?

Code List

Have an associated syndrome(s) (including chromosomal abnormality)?

Single Option

1; Yes

2, No

777; Do not know

Which ICD-10 code - associated syndrome(s)?

Code List

Gross Motor Function Classification System (GMFCS):

Code List

1; Level I 2; Level II 3; Level III 4; Level IV

Level V

777; Do not know

Bimanual Fine Motor Function Scale (BFMF):

Code List

1; Level I 21; Level II (a.) 22; Level II (b.) 31; Level III (a.) 33; Level III (b.) 41; Level IV (a.) 44; Level IV (b.) 5; Level V

777; Do not know

Manual Ability Classification System (MACS):

Code List

1; Level I 2; Level II 3; Level III 4, Level IV

5; level V

777; Do not know



Visual impairment? Single Option

1; Yes

2, No

777; Do not know

Severe visual impairment? Single Option

1; Yes

2, No

777; Do not know

Hearing impaired? Single Option

1; Yes

2, No

777; Do not know

Severe hearing impairment? Single Option

1; Yes

2, No

777; Do not know

Classification system for eating and drinking function (EDACS):

Code List


5; Level V

777; Do not know

How receive nutrition? Multiple Choice

11; Eats by themselves 21; Eats with help

22; Must be fed (orally) 30; Partial tube feeding

31; Full tube feeding

777; Do not know

Gastrostomy? Single Option

1; Yes

2, No

777; Do not know

Age at gastrostomy? (month) Numeric

Have had difficulty sleeping in the last month?

Code List

1; Never

2; Almost never

3; Sometimes

4; Often



5; Almost always

777; Do not know

Has had pain during the last month? Single Option

1; Yes

2, No

777; Do not know

Multiple Choice 1; Head

Multiple Choice 1; Abdomen

Multiple Choice 1; Leg - left

Multiple Choice 1; Legg - right

Multiple Choice 1; Hip - left

Multiple Choice 1; Hip - right

Multiple Choice 1; Shoulder / arm - left

Multiple Choice 1; Shoulder / arm - right

Multiple Choice 1; Back

Multiple Choice 1; Foot - left

Multiple Choice 0; Foot - right

Multiple Choice 777; Do not know

How often? Code List

1; Daily

2; Weekly

3; Seldom

777; Do not know

How strong? Code List

1; Very weak

2; Weak

3; Moderate

4; Strong

5; Very strong

777; Do not know

What measures have parents and/or the child taken to relieve or reduce pain?

Multiple Choice

1; Rest

2; Massage

3; Change position / rest position

4; Prescription Free Medicines (Paracet, Ibux, etc.)



5; Physical therapy directed at pain

6; Consult the general practitioner

7; Consulted the habilitation service

8; No measures

777; Do not know

Who reports pain? Multiple Choice

Child themselves

Mother/father

3; Other caregiver

777; Do not know

R

Are cognitive resources formally tested and/or assessed with questionnaire/interview?

Code List

1; Yes

2; No, not tried

3; No, only clinically evaluated

4; No, not testable

777; Do not know

R Age at testing/assessment? (month) Numeric

Test location: Multiple Choice

1; HABU

2; PPT

3; BUP

4; Barnevern

5; Statped

6; Other

777; Unknown

Other test place: Text Box

Tests/instruments used: Multiple Choice

1; Bayley-III 2; BRIEF / BRIEF-F

3; CPchild

4; Leiter-R

5; PEDI 6; NEPSY

7; VMI 8; WPPSI 9; WISC



10; Vineland

11; Other

777; Unknown

Other test(s)/instrument(s): Text Box

Register BRIEF-F/BRIEF score values?

Single Option

1; Yes, BRIEF-F

11; Yes, BRIEF

2, No

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Register VMI standard scores? Single Option 1; Yes

2, No

Table

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Single Option 1; <45



Register WPPSI scaled scores? Single Option 1; Yes

2, No



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Register WISC scaled scores? Single Option 1; Yes

2, No

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REG5_KOG_RESULT Assessment according to ICD-10 criteria:

Code List

1; Normal: No intellectual impairment

2; F70: Slight intellectual impairment

3; F71: Moderate intellectual impairment 4; F72-73: Severe or deep intellectual impairment 5; F79: Intellectual impairment, unspecified degree

6; F80-81: Specific developmental disorders

7; F83: Mixed developmental disorder in specific skills

777; Unknown: Not possible to evaluate from

studies conducted so far

(if REG5_KOG_KART = 3) Clinical assessment: Code List

1; Normal 2; General learning difficulties

3; Intellectual disability

777; Do not know

REG5_KOG_VURD_ALDER (if REG5_KOG_KART

= 3) Age in clinical assessment? (month) Numeric



Register intellectual impairment? Single Option 1; Yes

2, No

Assessment of adaptive skills was based on:

Multiple Choice

1; Vineland-II 2; PEDI 3; CPchild

4; Clinical observation

5; Other

Other adaptive skills: Text Box

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Viking speech scale: Code List

1; I 2; II 3; III 4; IV

777; Do not know

Communication Function Classification System (CFCS):

Code List


5; Level V

777; Do not know

Need Augmentative and Alternative Communication (AAC)?

Single Option

1; Yes

2, No

777; Do not know

Use AAC? Single Option

1; Yes

2, No

777; Do not know

What type of AAC? Multiple Choice 10; Manual characters



11; Graphic characters

12; Other

777; Do not know

AAC Other: Text Box

Dominant hand: Code List

1; Right

2, Left

3; Ambidextrous

777; Do not know

Appraised with standardized language test?

Single Option

1; Yes

2, No

777; Do not know

Type: Multiple Choice

1; Reynell 2; ITPA

3; Weschler (subtest) 4; Other method

Other method: Text Box

Age at testing? (year) Numeric

Test result: Code List

1; Normal 2; Slightly impaired

3; Moderately impaired

4; Does not understand speech

777; Do not know

(if REG5_KS_SPRAK = 2) Why was no test conducted? Code List

1; Not found necessary

2; Not testable

3; Lack capacity

4; Lack expertise

5; On waiting list

777; Do not know

(if REG5_KS_SPRAK = 2) Clinically evaluated? Single Option

1; Yes

2, No

777; Do not know



Age at evaluation? (year) Numeric

Clinical assessment result: Code List

1; Normal 2; Slightly impaired

3; Moderately impaired

5; Does not understand speech

777; Do not know

Have received botulinum toxin? Single Option

1; Yes

2, No

777; Do not know

Where? Multiple Choice

1; upper extremities

2; lower extremities

777; Do not know

Have taken baclofen orally? Single Option

1; Yes

2, No

777; Do not know

Have a baclofen pump? Single Option

1; Yes

2, No

777; Do not know

Age at baclofen pump? (month) Numeric

Have undergone orthopedic surgery?

Single Option

1; Yes

2, No

777; Do not know

Type: Multiple Choice

1; Soft Tissue procedures

2; Bone surgery

777; Do not know

Soft Tissue procedure where? Multiple Choice



777; Do not know

Bone surgery where? Multiple Choice



777; Do not know

Treatment abroad? Single Option 1; Yes



2, No

777; Do not know

Type of treatment and where: Text Box

Has taken cerebral MRI? Single Option

1; Yes

2, No

777; Do not know

Time point (when)? Code List 1; Neonatal up to 8 weeks

2; Postneonatal (≥ 2 month)

Is cerebral UL / CT taken?

Single Option

1; Yes

2, No

777; Do not know

IF MRI TIME = 1 Neonatal

Age at neonatal MR? (weeks) Numeric

Single Option A; Maldevelopments

Code List

A1; A.1 - Disorders of proliferation, migration or organisation

A.2 - Other maldevelopments (among others: holoprosencephaly, Dandy Walker malformation, corpus callosum agenesis, cerebellar hypoplasia...)

Single Option B; Predominant white matter injury

Code List

B1; B.1 - Echogenicity or MR signal intensity abnormalities

B.2 - Periventricular haemorrhagic infarction (IVH grade lV) B3; B.3 - Posthaemorrhagic ventricular dilatation

2 Code List

B.1.1 - Punctate white matter lesions, abnormal hyperintensity on T1w

B.1.2 - Periventricular cystic lesions and/or tissue loss (cystic periventricular leucomalacia)

Single Option C; Predominant grey matter injury

Code List C1; C.1 - Basal ganglia/thalamus lesions



C.2 - Cortico-subcortical lesions only (watershed lesions in parasagittal distribution/multicystic encephalomalacia) not covered by C3

C.3 - Arterial infarctions (middle cerebral artery/other) C.4 - Haemorrhage

Code List

C.1.1 - Isolated (only basal ganglia/thalamus) C.1.2 - With additional lesions (basal ganglia /thalamus + cortical grey matter and/or + hippocampus)

Code List C.4.1 - Cortico-subcortical C.4.2 - Basal ganglia/thalamus

Single Option D; Miscellaneous (among others: cerebellar atrophy, cerebral atrophy, cerebellar injury, haemorrhage not covered by B2/B3/C4, delayed myelination, ventriculomegaly not covered by B, calcifications, brainstem lesions etc.)

Single Option E; Normal

Single Option Z; Do not know

Injury location? Code List

1; Bilateral injury

2; Right-sided injury (greatest on right side) 3; Left-sided injury (greatest on left side) 4; Not applicable (i.e. normal findings) 777; Do not know

PLIC involvement? Single Option

1; Yes

2, No

777; Do not know

Neonatal MRI findings text: Text Box

IF MRI TIME = 2 Postneonal

Age at postneonatal MRI? (month) Numeric

Single Option A: Maldevelopments



Code List

A1; A.1 - Disorders of proliferation, migration or organisation

A.2 - Other maldevelopments (among others: holoprosencephaly, Dandy Walker malformation, corpus callosum agenesis, cerebellar hypoplasia...)

Single Option B; Predominant white matter injury

Code List

B.1 - Periventricular leucomalacia (PVL) (mild/severe) B.2 - Sequelae of intraventricular hemorrhage (IVH) or periventricular hemorrhagic infarction (PVHI) B.3 - Combination of PVL and IVH sequelae

Single Option C; Predominant grey matter injury

Code List

C1; C.1 - Basal ganglia/thalamus lesions (mild/moderate/severe) C.2 - Cortical-subcortical lesions only (watershed lesions in parasagittal distribution / multicystic encephaliamalacia) not covered by C3

C.3 - Arterial infarctions (middle cerebral artery/other)

Single Option D; Miscellaneous (among others: cerebellar atrophy, cerebral atrophy, delayed myelination, ventriculomegaly not covered by B, hemorrhage not covered by B, brainstem lesions, calcifications)

Single Option E; Normal

Single Option Z; Do not know

Injury location? Code List

1; Bilateral injury

2; Right-sided injury (greatest on right side) 3; Left-sided injury (greatest on left side) 4; Not applicable (i.e. normal findings) 777; Do not know

MRI findings text: Text Box

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Questionnaire to collect information on CP register/survey ...

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