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The Child & Youth CompreHensIve Longitudinal Database for Deep Brain Stimulation (CHILD-DBS)

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Abstract

Purpose

Deep brain stimulation (DBS) is a common tool for the treatment of movement disorders in adults; however, it remains an emerging treatment modality in children with a growing number of indications, including epilepsy and dystonia. The Child & Youth CompreHensIve Longitudinal Database of DBS (CHILD-DBS) study aims to prospectively collect relevant data on quality of life (QoL), safety, efficacy, and long-term neurodevelopmental outcomes following DBS in children.

Methods

Data are collected and managed using the Research Electronic Data Capture (REDCap). This database aims to collect multicentre comprehensive and longitudinal clinical, QoL, imaging and electrophysiologic data for children under the age of 19 undergoing DBS.

Results

Both general and indication-specific measures are collected at baseline and at four time points postoperatively: 6 months, 1 year, 2 years, and 3 years. The database encompasses QoL metrics for children, including the PedsQL (Pediatric Quality of Life Inventory, generic), QOLCE (Quality of Life in Childhood Epilepsy Questionnaire, parent-rated), CHU 9D (Child Health Utility 9D), and KIDSCREEN. Caregiver clinical and QoL metrics, including QIDS (Quick Inventory of Depressive Symptomatology), GAD-7 (Generalized Anxiety Disorder 7-item scale), and CarerQoL-7D (The Care-related Quality of Life Instrument), are similarly prospectively collected. Healthcare resource utilization is also assessed before and after DBS. Lastly, stimulation parameters and radiographic and electrophysiologic data are collected within the database.

Conclusions

The development of the current prospective paediatric DBS database with carefully selected physical and psychosocial outcomes and assessments will complement existing efforts to enhance and facilitate multisite collaboration to further understand the role of DBS in childhood.

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Author information

Authors and Affiliations

  1. Division of Neurosurgery, Department of Surgery, University of Toronto, Toronto, Canada

    Han Yan, Suneil K. Kalia & George M. Ibrahim

  2. Division of Neurosurgery, The Hospital for Sick Children, Toronto, Ontario, Canada

    Han Yan, Sara Breitbart & George M. Ibrahim

  3. Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, Ontario, Canada

    Han Yan

  4. University Health Network, Toronto, Ontario, Canada

    Suneil K. Kalia

  5. Neurosciences and Mental Health Program, The Hospital for Sick Children, Toronto, Ontario, Canada

    Lauren Siegel

  6. Division of Neurosurgery, Toronto Western Hospital, Toronto, Canada

    Suneil K. Kalia

  7. Division of Neurology, The Hospital for Sick Children, Toronto, Ontario, Canada

    Carolina Gorodetsky, Hernan D. Gonorazky, Ivanna Yau, Cristina Go & Elizabeth Donner

  8. Krembil Brain Institute, Toronto, Ontario, Canada

    Suneil K. Kalia & Alfonso Fasano

  9. Edmond J. Safra Program in Parkinson’s Disease, Morton and Gloria Shulman Movement Disorders Clinic, Toronto Western Hospital, University Health Network, Division of Neurology, University of Toronto, Toronto, Ontario, Canada

    Alfonso Fasano

  10. CenteR for Advancing Neurotechnological Innovation to Application (CRANIA), Toronto, Ontario, Canada

    Suneil K. Kalia & Alfonso Fasano

  11. Faculty of Medicine, Université de Montréal, Montreal, Quebec, Canada

    Alexander G. Weil

  12. Division of Neurosurgery and Pediatrics, Sainte Justine Hospital, Montreal, Quebec, Canada

    Alexander G. Weil

  13. Department of Neurosurgery, UCLA Mattel Children’s Hospital, David Geffen School of Medicine at UCLA, Los Angeles, CA, USA

    Aria Fallah

  14. Institute of Biomedical Engineering, University of Toronto, Toronto, Ontario, Canada

    George M. Ibrahim

  15. Institute of Medical Science, University of Toronto, Toronto, Ontario, Canada

    George M. Ibrahim

Authors
  1. Han Yan
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  2. Lauren Siegel
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  3. Sara Breitbart
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  4. Carolina Gorodetsky
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  5. Hernan D. Gonorazky
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  9. Suneil K. Kalia
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  10. Alfonso Fasano
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  11. Alexander G. Weil
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  13. George M. Ibrahim
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Corresponding author

Correspondence to George M. Ibrahim.

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Conflict of interest

SKK reports honoraria, consulting and speaker fees received from Medtronic. AF reports honoraria received for consultancies from Abbvie, Medtronic, Boston Scientific, Sunovion, Chiesi farmaceutici, UCB, and Ipsen; honoraria for participation in advisory boards from Abbvie, Boston Scientific, and Ipsen. HY, LS, SB, CG, HDG, IY, CG, ED, AGW, AF, GMI have no disclosures.

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Yan, H., Siegel, L., Breitbart, S. et al. The Child & Youth CompreHensIve Longitudinal Database for Deep Brain Stimulation (CHILD-DBS). Childs Nerv Syst 37, 607–615 (2021). https://doi.org/10.1007/s00381-020-04880-4

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  • DOI: https://doi.org/10.1007/s00381-020-04880-4

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