Information for researchers

Design and objective

In Kaart is an open cohort study that collects data from people (age 0-99 years) who are neurodivergent and/or have disabilities. In Kaart was set up by a multidisciplinary group of researchers (Over ons | In Kaart - register voor en door mensen met ontwikkelingsproblemen.) in close collaboration with stakeholder representatives, with the ambition to better describe and understand the social participation, social functioning, and well-being of people with neurodivergence and/or disabilities and their families, and contribute to their quality of life by investigating risk and resilience factors that may set them upon divergent developmental pathways. This is partly done by sharing findings with and through stakeholder interest groups. Strengths of In Kaart include the variation across type and degree of neurodivergence and disabilities and the participatory process of research agenda setting. In Kaart started to collect data from September 2022 onwards.

Participants

In Kaart pursues a developmental trait-based perspective on neurodivergence in the context of a society in which neurodevelopmental conditions are mostly medicalized and defined as disorders (Layinka et al., 2024). Therefore, the target population of In Kaart  consists of people with confirmed or suspected diagnoses of neurodevelopmental disorders or disabilities starting in childhood and their parents. In Kaart includes participants who have a (suspected) diagnose of Autism Spectrum Disorder (ASD), Attention Deficit and Hyperactivity Disorder (ADHD), developmental co-ordination disorder (DCD), dyslexia, Developmental Language Disorder(DLD), visual impairment and Intellectual disability. Parents can also report about their children (0-15 years old) without a (suspected) diagnosis if they are worried about their child’s development. Participants are recruited through convenience sampling. In Kaart is a partnership between researchers and stakeholder organizations, such as the parent organization ‘Balans’ and ‘Impuls en Woortblind’, in which each partner contributes to recruitment, based on shared agenda setting and dissemination. Participants have the option to complete a questionnaire about their children (ages 0-15), themselves (ages 16-99), or the individuals they represent (ages 16-99 and people declared legally incompetent). Upon enrolling in In Kaart, participants are required to complete an informed consent form online. After consent is provided, they receive a link to an initial baseline questionnaire via email. Participants are then invited to complete a follow-up questionnaire annually, which covers a range of additional topics.

Personalized participant feedback

In Kaart places great importance on ensuring that participants and their families not only share information with the registry but can also access their own data to gain personal insights and use it to reflect upon. Additionally, participants and their families may access their data to enhance processes of care. We followed the example of the Netherlands Autism Register in providing personalized feedback based on participants’  own data. Two times a year, participants of In Kaart receive such feedback. In the fall of each year they receive a report about a selection of their answers compared to the group of In Kaart. On the condition of sufficient subgroup size, we additionally provide a comparison on sub group level. Furthermore, immediately after finishing the follow up questionnaire in spring, participant get a personalized report about their answers compared to their answers from the previous year.

Description of the participants (July 2024)

• Total number of participants who enrolled in In Kaart between September 2022 and July 2024= 860
• Participants (who filled out 50% or more of the baseline questionnaire)

◦ N (parents reporting on their child 15 years or younger) = 324

◦ N (adults reporting on themselves 16 years or older) = 329

◦ N (legal representative reporting on the person they represent) = 22

• Diagnoses (across all informants)

◦ N (Autism Spectrum Disorder (ASD)= 206

◦ N (Attention Deficit and Hyperactivity Disorder (ADHD) = 279

◦ N (Developmental Co-ordination Disorder (DCD) = 63

◦ N (dyslexia) = 137

◦ N (visual impairment) = 51

◦ N (intellectual disability) = 73

◦ N *(Developmental Language Disorder (DLD) = 10

• Suspected diagnoses (across all informants)

◦ N (suspected Autism Spectrum Disorder (ASD)= 82

◦ N (suspected Attention Deficit and Hyperactivity Disorder (ADHD) = 77

◦ N (suspected Developmental Co-ordination Disorder (DCD) = 19

◦ N (suspected dyslexia) = 47

◦ N suspected (visual impairment) = 7

◦ N (suspected intellectual disability) = 7

◦ N *( suspected Developmental Language Disorder (DLD) = 3

For more detailed information about the current data, please review the group description here.

* (Developmental Language Disorder (DLD) has been added as a specific target group on February 1 2024.

Measurements

Baseline questionnaires are  filled out when enrolling with In Kaart. Yearly questionnaires with follow up of baseline questions and variable theme questions (for information on these questionnaires, please contact the In Kaart team via Inkaart@vu.nl). In the Spring of 2024 the first follow up has been conducted.

Follow up and themes

The first follow-up questionnaire was distributed in the spring of 2024 (data collection took place from May 7, 2024, to July 5, 2024). The themes included: 'Parenting and Children's Digital Behavior' for parents reporting on their children, 'Stigma in Education and Work' for adults reporting on themselves, and 'Resilience and Caregiver Burden' for legal representatives reporting on the individuals they represent.

Working with In Kaart data

Researchers can use pseudonymized In Kaart data for their research if the steering group of In Kaart approves a research proposal (link naar formulier). We strive to review the request within 2 weeks after which the applicant will be informed of the decision. If the request is not approved, you might be requested to revise the proposal and resubmit. Once your data request is approved, researchers are asked to sign a data sharing agreement (DSA). Once we receive a signed data sharing agreement, data management will prepare a dataset. A typical data request takes approximately 2 weeks to prepare, but this depends on the complexity of the dataset and the availability of the In Kaart team.

Collected data includes, among others;

General profile, Specific information about the different diagnoses, Family characteristics , Diagnosis, Treatment, medication & guidance, Housing, Education, Daily activities and work, Social contacts, General well-being, Physical health. Here you will find more information on the baseline data. If you have any questions, please contact the In Kaart team via email: inkaart@vu.nl

Organisation and current studies

The steering committee of In Kaart is comprised of the initiators of the In Kaart project (Over ons | In Kaart - register voor en door mensen met ontwikkelingsproblemen.) and stakeholders such as representatives of the parental perspective and experts with lived experience. The project team consists of the project leader and the data manager. In Kaart additionally collaborates closely with individuals with lived experience and their families, as well as expert groups and healthcare providers. From designing questionnaires to making decisions on research questions, website layout, and wording, the project team receives both ongoing and ad-hoc input from individuals with lived experiences through various methods such as focus groups, polls, meetings, and feedback sessions. To advance the mission of improving the lives of individuals with neurodivergence and/or disabilities, In Kaart initiates and supports research studies that contribute to this objective. Researchers have the opportunity to distribute questionnaires through In Kaart as part of a larger, funded project (examples provided below). Additionally, researchers can use existing In Kaart data by submitting a research proposal. For more information, please visit XXX (link to 'Working with In Kaart Data').

Parents in Balance (2022-2026)

Parents of children with complex care needs often face overexertion and burnout due to, for example, the extra caregiving and concerns for their child. Currently, parents and their support systems do not always grasp what is needed to build resilience in the face of these ongoing demands. Balancing their child's care with their own needs is a constant challenge. Through the Parents in Balance project, we are exploring what burnout truly looks like for parents. By working alongside parents, healthcare professionals, and researchers, we aim to uncover what helps parents to stay resilient, how often burnout occurs, and which factors contribute to it. These insights will help develop effective solutions, enhance care practices, and inform policy.For more information, please see the links below:  Ouders in Evenwicht – doorgaan als de kinderen voor gaan (wordpress.com), Burn-on Tool - Schouders

Parenting and digital behavior in children (2023-2027)

Research proposal (2024) Tilburg University

In children with ASD or ADHD, core symptoms are often accompanied by various types of behavioral and emotional problems (both internalizing and externalizing). Since these issues are related to adverse socio-emotional outcomes, gaining a deeper understanding of the contributing and predictive factors is crucial. Much research has already been conducted on parental factors that may influence these internalizing and externalizing problems in children. However, while most studies have focused on parental risk factors, there is still much less known about potential protective factors. In Kaart data will be used to study these questions.

Ethical Considerations

Prior to the start of In Kaart, the Medical Ethics Review Committee of Amsterdam University Medical Center location VUmc confirmed that the Medical Research Involving Human Subjects Act (WMO) does not apply to In Kaart (2022.0258). Furthermore, In Kaart was reviewed and approved by the Permanent Committee on Science and Ethics (VCWE) of the Faculty of Behavioural and Movement Sciences of the VU University Amsterdam (VCWE-2022-103). Participants give informed consent prior to filling out questionnaires. Participants fill out a written informed consent before starting the questionnaire. Participant information on all aspects of In Kaart are  provided on this website.

Data storage

We use two separate computer systems to keep personal contact information distinct from research data. Names, email addresses, and possible postal codes of all participants are stored in a separate database for In Kaart, using software of the Person Administration of the Netherlands Twin Register (PANTER) database (Ligthart, 2019). Personal data of participants are stored under a different number than the research data, ensuring that individual persons can not be identified through the research data. The participant database is not connected to the internet nor to any other computer network and is stored in a physical safe. Personal data are managed by a small team for administrative purposes, such as sending research invitations and tracking whether questionnaires have been completed. It also helps us keep track of relationships between individuals, such as which child belongs to which parents or caregivers. The computer is password-protected, and the data is encrypted, making it unreadable to anyone without the appropriate password. Research data that contains is stored on Research Drive, a data storage service that complies with Dutch and European privacy laws (Research Drive | SURF.nl). The data stored here is pseudonymized, meaning that no personal information (name, postal code, email address) is included nor any numbers that are directly linked to personal data. Each researcher who is granted access to research data is required to sign a non-disclosure agreement that forbids unauthorized sharing of the data. External researchers who are granted access to data through a data sharing agreement are bound to similar provisions

References

Layinka, O., Hargitai, L. D., Shah, P., Waldren, L. H., & Leung, F. Y. N. (2024). Five interdisciplinary tensions and opportunities in neurodiversity research. eLife, 13, e98461. https://doi.org/10.7554/eLife.98461

Ligthart, L., van Beijsterveldt, C. E., Kevenaar, S. T., de Zeeuw, E., van Bergen, E., Bruins, S., ... & Boomsma, D. I. (2019). The Netherlands twin register: longitudinal research based on twin and twin-family designs. Twin Research and Human Genetics, 22(6), 623-636.