Dyskinetic Cerebral Palsy Due to Perinatal HypoxiaSTIM-CPNCT02097693
Effect of DBS on Quality of Life in Dyskinetic Cerebral Palsy
An observational study of Dyskinetic Cerebral Palsy Due to Perinatal Hypoxia, run by University Hospital of Cologne at 1 site in Germany.
Trial summary
There are limited therapeutical options for patients with secondary dystonia due to cerebral palsy. Pharmacotherapy is often without effect, or side effects are severe. Meanwhile deep brain stimulation (DBS) has proven to be a safe and effective therapy for patients with parkinson´s disease or primary / idiopathic… Read more about this study
- Who is it for?
- Ages 7 to 18 years
- Conditions the study is for
- Dyskinetic Cerebral Palsy Due to Perinatal Hypoxia
- How many people
- 16 participants
- Where
- 1 siteGermany
- Study dates
- 4 Mar 2014to 31 Dec 2021
- Phase
- Observational
- Are there results?
- None posted in the registry
Key requirements
Who can take part, as listed by the sponsor. Only the study team can confirm whether you are eligible, so take this list to your doctor.
- Ages 7 to 18 years
- All sexes
- No healthy volunteers
- Child, Adult
Study population: primary care clinic
Who may be able to join
- The treating physician has chosen GPi-DBS for the treatment of the secondary dystonia caused by cere-bral palsy in this patient
- Patient and/or legal representative, if the patient is underaged or not capable to give consent himself, have chosen GPi-DBS as treatment
- The consent to participate in the trial of the underaged patient, if he is capable to understand the study requirements, is required
- Age at enrolment 7-18 years
- Diagnosis of secondary dystonia due to cerebral palsy caused by perinatal hypoxic injury
- Anti-dystonic pharmacotherapy insufficient (e.g. Jankovic J. Medical treatment of dystonia. Movement disorders, Vol. 28, No. 7, 2013) 67
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- Stable anti-dystonic medication over the last 30 days
- Globus pallidus internus (pars posterior) and thalamus (motor part) intact on MRI (not older than 2 years - if possible)
- No fixed severe skeletal deformations with loss of function, which need immediate orthopaedic surgical intervention
- Sufficient compliance of the patient or the legal representative if the patient is underaged or not capable to give consent himself to take part in the study
- Informed consent to take part in the study from patient and/or legal representative if the patient is underaged or not capable to give consent himself
- Patient and/or legal representative if the patient is underaged or not capable to give consent himself, understands the study requirements and the treatment procedures and provides written informed consent before any study-specific tests or procedures are performed
Who cannot join
- • Patients with known primary (e.g. DYT1) or idiopathic dystonia
- Severe axial hypotonia with total loss of head control (e.g. absence of control at "upper thoracic level" in the SATCo score) (medication effect excluded)
- Fixed hemi-dystonia
- Severe spasticity in knee- and elbow-flexors and -extensors (Modified Ashworth Scale >3)
- Fixed severe skeletal contractions with loss of function which require immediate orthopaedic surgical intervention
- Patients with other severe concurrent neurological disease (e. g. brain tumor, neurodegenerative diseases, trauma etc.)
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- Condition likely to require use of MRI in the future
- Any intracranial abnormality or medical condition that would contraindicate DBS surgery
- Any findings in neuropsychological screening assessments that would contraindicate DBS surgery
- Any current drug and / or alcohol abuse
- Any history of frequent grand-mal seizures without response to anticonvulsive treatment
- Any other active implanted device (e.g. Cochlear implant, pacemaker), whether turned on or off, would be allowed provided that they do not interfere with functioning of the device.
- Any previous brain surgery that would interfere with the placement of the leads or the functioning of the device.
- A history of neurostimulation intolerance in any area of the body.
- Currently on any anticoagulant medications that cannot be discontinued during perioperative period.
- Any significant medical condition that is likely to interfere with study procedures or likely to confound evaluation of study endpoints, including any terminal illness with survival <12 months.
- Participation in another drug, device, or biologics trial concurrently or within the preceding 30 days; any other trial participation should be approved by the Principal Investigator.
- A female that is breastfeeding or of child bearing potential with a positive urine pregnancy test or - if a person is sexually active - not using sufficient contraception with a Pearl Index of less than 1% including all forms of hormonal contraception ("antibaby-pill", hormonal plaster, NuvaRing®, Implanon®, hormonal depot injections, contraceptive coil), the tubal ligature (female sterilization). Alternatively, the female of child bearing potential is sexually abstinent.
Trial locations and contacts
1 site in 1 country.
About this study
Official title: Effect of Deep Brain Stimulation in the Globus Pallidus Internus on Quality of Life in Young Patients With Dyston-dyskinetic Cerebral Palsy
There are limited therapeutical options for patients with secondary dystonia due to cerebral palsy. Pharmacotherapy is often without effect, or side effects are severe. Meanwhile deep brain stimulation (DBS) has proven to be a safe and effective therapy for patients with parkinson´s disease or primary / idiopathic dystonia. Experiences with DBS in patients with dyskinetic cerebral palsy are limited with heterogeneous data.
With STIM-CP we investigate the effect of DBS on quality of life in young patients with a dyskinetic movement disorder (dyskinetic cerebral palsy) due to perinatal hypoxic brain injury. Additionally, the effect of DBS on motor development, speech, memory, attention, cognition and pain perception will be assessed.
Read the detailed description
In total, 20 patients aged 7-18 years diagnosed with dyskinetic cerebral palsy due to perinatal asphyxia, who will receive DBS, should be included. 11 German DBS-centres will participate in the trial. Effects of DBS will be assessed up to 36 months after Initial Implantation.
There are two preoperative visits (screening and baseline) and nine postoperative visits (implantation, 3-, 6-, 9-, 12-, 24- and 36-moths follow-up). We assume that DBS reduces the severity of dystonia and improves the quality of life in these patients.
- Keywords
- DBS, quality of life, dystonia, dyskinetic cerebral palsy
- Medical subject headings
- Dystonia, Cerebral Palsy
What participants receive
What participants receive. In a randomised study each person is assigned to one group by chance.
| Study group | Role | What they receive |
|---|---|---|
| dyston-dyskinetic cerebral palsy | Young patients with dyston-dyskinetic cerebral palsy who receive DBS in the GPi |
What is being measured
The primary outcome is the main question the study is designed to answer.
Caregiver Priorities and Child Health Index of Life with Disabilities (CPCHILD)
Difference in CPCHILD before and 36 months on DBS (response=improvement > 10%)
Measured: CPCHILD 12 months after DBS
Secondary outcomes (15)
Burke-Fahn-Marsden-Dystonia Rating Scale movement and disability
Assessment of the severity of dystonia
Measured: 0, 6, 12, 24 and 36 months after DBS
Dyskinesia Impairment Scale
Assessment of the severity of chorea and dystonia
Measured: 0, 12, 24 and 36 months
Tardieu Scale
Assessment of the severity of spasticity
Measured: 0 and 12 months after DBS
Frenchay Dysarthria Assessment
Assessment of speech and swallowing
Measured: 0, 12, 24 and 36 months after DBS
SF-36
Assessment of Quality of life
Measured: 0, 6, 12, 24 and 36 months after DBS
Strengths and Difficulties Questionnaire
Assessment of mood and attention
Measured: 0, 6, 12, 24 and 36 months after DBS
Snijders-Oomen-Non-Verbal-Intelligence Test (SON-R)
Assessment of Cognition
Measured: 0 and 12 months
Attentional Network Test (ANT)
Assessment of Attention
Measured: 0 and 12 months after DBS
Non-Verbal-Learning Test (NVLT)
Assessment of cognition
Measured: 0 and 12 months after DBS
Wong Baker Faces
Assessment of pain
Measured: 0, 6, 12, 24 and 36 months after DBS
Family Scale (FaBel)
Assessment of the burden for caregivers
Measured: 0, 6, 12, 24 and 36 months after DBS
Caregiver Priorities and Child Health Index of Life with Disabilities (CPCHILD)
Assessment of quality of life
Measured: 0, 6, 24 and 36 months after DBS
Canadian Occupational Performance Measure (COPM)
Assessment of activities of daily living
Measured: COPM 0 and 12 months after DBS
Gross Motor Function Measure (GMFM-66)
Assessment of physical disability
Measured: GMFM-66 0 and 12 months after DBS
Gross Motor Function Classification System (GMFCS)
Degree of physical impairment
Measured: GMFCS 0, 12, 24 and 36 months after DBS
Timeline
From the start of the study to its completion; the mark is today. Estimated dates are the sponsor’s plan.
- First posted27 Mar 2014 (estimated)
- Study start4 Mar 2014
- Primary completion10 Mar 2020
- Study completion31 Dec 2021
Resources
- Official record on ClinicalTrials.govThe registry entry this page is built from, with its full change history.
- Publications (1)Papers the sponsor has linked to this study.
- Other trials for Dyskinetic Cerebral Palsy Due to Perinatal HypoxiaStudies of the same condition, open and under way.
- What the trial phases meanHow a treatment moves from first tests in people to approval.
More details
For doctors and researchers: how the study is designed, who runs it, and its registry IDs.
Study design
- Study type
- Observational
- Observational model
- Cohort
- Time perspective
- Prospective
- Enrolment
- 16 participants (actual)
Sponsor and investigators
- Lead sponsor
- University Hospital of Cologne
- Sponsor type
- University, hospital or other
- Collaborators
- University Hopsital Schleswig Holstein Campus Lübeck, Boston Scientific Corporation, University Hsopital of Magdeburg, University Hospital Munich, Schoen Klinik Vogtareuth, University Hospital Tuebingen, Heinrich-Heine University, Duesseldorf, Hannover Medical School, University Hospital Schleswig-Holstein, Wuerzburg University Hospital, University Hospital Freiburg, University Hospital Berlin Charite
- Responsible party
- Principal investigator, Anne Koy, University of Cologne
- Investigators
- Anne Koy, MD, Principal investigator, University Hospital Cologne, Germany
IDs, dates and publications
- ClinicalTrials.gov ID
- NCT02097693
- Sponsor's protocol ID
- Uni-Koeln-1603
- Acronym
- STIM-CP
- Status last verified
- Mar 2025
- First submitted
- 24 Mar 2014
- Last updated
- 30 Mar 2025
- Results posted
- No
- Data monitoring committee
- Yes
Publications
Koy A, Kuhn AA, Huebl J, Schneider GH, van Riesen AK, Eckenweiler M, Rensing-Zimmermann C, Coenen VA, Krauss JK, Saryyeva A, Hartmann H, Haeussler M, Volkmann J, Matthies C, Horn A, Schnitzler A, Vesper J, Gharabaghi A, Weiss D, Bevot A, Marks W, Pomykal A, Monbaliu E, Borck G, Mueller J, Prinz-Langenohl R, Dembek T, Visser-Vandewalle V, Wirths J, Schiller P, Hellmich M, Timmermann L; STIM-CP investigators. Quality of Life After Deep Brain Stimulation of Pediatric Patients with Dyskinetic Cerebral Palsy: A Prospective, Single-Arm, Multicenter Study with a Subsequent Randomized Double-Blind Crossover (STIM-CP). Mov Disord. 2022 Apr;37(4):799-811. doi: 10.1002/mds.28898. Epub 2021 Dec 29.
PubMed 34967053
Study at a glance
From the registry record, last updated by the sponsor on 30 Mar 2025. Recruitment status is as the sponsor reported it: confirm with the study team.
- Official title
- Effect of Deep Brain Stimulation in the Globus Pallidus Internus on Quality of Life in Young Patients With Dyston-dyskinetic Cerebral Palsy
- ClinicalTrials.gov ID
- NCT02097693
- Acronym / sponsor ID
- STIM-CP / Uni-Koeln-1603
- Keywords
- DBS, quality of life, dystonia, dyskinetic cerebral palsy
- Study type
- Observational
- Recruitment status
- Completed
- Enrolment
- 16 participants (actual)
- Lead sponsor
- University Hospital of CologneUniversity, hospital or other
- Collaborators
- University Hopsital Schleswig Holstein Campus Lübeck, Boston Scientific Corporation, University Hsopital of Magdeburg, University Hospital Munich, Schoen Klinik Vogtareuth, University Hospital Tuebingen, Heinrich-Heine University, Duesseldorf, Hannover Medical School, University Hospital Schleswig-Holstein, Wuerzburg University Hospital, University Hospital Freiburg, University Hospital Berlin Charite
- Study start
- 4 Mar 2014 (actual)
- Primary completion
- 10 Mar 2020 (actual)
- Study completion
- 31 Dec 2021 (actual)
- First posted
- 27 Mar 2014 (estimated)
- Results
- Not posted in the source record
Clinical summary
The research question as the sponsor registered it. This describes what the study plans to test, not what it found.
There are limited therapeutical options for patients with secondary dystonia due to cerebral palsy. Pharmacotherapy is often without effect, or side effects are severe. Meanwhile deep brain stimulation (DBS) has proven to be a safe and effective therapy for patients with parkinson´s disease or primary / idiopathic dystonia. Experiences with DBS in patients with dyskinetic cerebral palsy are limited with heterogeneous data.
With STIM-CP we investigate the effect of DBS on quality of life in young patients with a dyskinetic movement disorder (dyskinetic cerebral palsy) due to perinatal hypoxic brain injury. Additionally, the effect of DBS on motor development, speech, memory, attention, cognition and pain perception will be assessed.
Detailed description
In total, 20 patients aged 7-18 years diagnosed with dyskinetic cerebral palsy due to perinatal asphyxia, who will receive DBS, should be included. 11 German DBS-centres will participate in the trial. Effects of DBS will be assessed up to 36 months after Initial Implantation.
There are two preoperative visits (screening and baseline) and nine postoperative visits (implantation, 3-, 6-, 9-, 12-, 24- and 36-moths follow-up). We assume that DBS reduces the severity of dystonia and improves the quality of life in these patients.
Study design
- Observational model
- Cohort
- Time perspective
- Prospective
- Number of arms
- 1
| Arm | Type | Receives |
|---|---|---|
| dyston-dyskinetic cerebral palsy | – | –Young patients with dyston-dyskinetic cerebral palsy who receive DBS in the GPi |
Who may qualify
- Ages
- 7 to 18 years
- Sex
- All
- Healthy volunteers
- Not accepted
- Age groups
- Child, Adult
- Study population
- primary care clinic
Key inclusion criteria (12 listed)
- The treating physician has chosen GPi-DBS for the treatment of the secondary dystonia caused by cere-bral palsy in this patient
- Patient and/or legal representative, if the patient is underaged or not capable to give consent himself, have chosen GPi-DBS as treatment
- The consent to participate in the trial of the underaged patient, if he is capable to understand the study requirements, is required
- Age at enrolment 7-18 years
- Diagnosis of secondary dystonia due to cerebral palsy caused by perinatal hypoxic injury
Key exclusion criteria (18 listed)
- • Patients with known primary (e.g. DYT1) or idiopathic dystonia
Eligibility is decided by the study team after screening; this overview does not establish that a patient qualifies. Full inclusion and exclusion criteria.
Primary outcome
Caregiver Priorities and Child Health Index of Life with Disabilities (CPCHILD)
Time frame: CPCHILD 12 months after DBS
Difference in CPCHILD before and 36 months on DBS (response=improvement > 10%)
15 secondary outcomes
Burke-Fahn-Marsden-Dystonia Rating Scale movement and disability
Time frame: 0, 6, 12, 24 and 36 months after DBS
Dyskinesia Impairment Scale
Time frame: 0, 12, 24 and 36 months
Tardieu Scale
Time frame: 0 and 12 months after DBS
Frenchay Dysarthria Assessment
Time frame: 0, 12, 24 and 36 months after DBS
SF-36
Time frame: 0, 6, 12, 24 and 36 months after DBS
Strengths and Difficulties Questionnaire
Time frame: 0, 6, 12, 24 and 36 months after DBS
Snijders-Oomen-Non-Verbal-Intelligence Test (SON-R)
Time frame: 0 and 12 months
Attentional Network Test (ANT)
Time frame: 0 and 12 months after DBS
Non-Verbal-Learning Test (NVLT)
Time frame: 0 and 12 months after DBS
Wong Baker Faces
Time frame: 0, 6, 12, 24 and 36 months after DBS
Family Scale (FaBel)
Time frame: 0, 6, 12, 24 and 36 months after DBS
Caregiver Priorities and Child Health Index of Life with Disabilities (CPCHILD)
Time frame: 0, 6, 24 and 36 months after DBS
Canadian Occupational Performance Measure (COPM)
Time frame: COPM 0 and 12 months after DBS
Gross Motor Function Measure (GMFM-66)
Time frame: GMFM-66 0 and 12 months after DBS
Gross Motor Function Classification System (GMFCS)
Time frame: GMFCS 0, 12, 24 and 36 months after DBS
Results and safety
The study is completed, but results are not available in the source record. That does not mean the treatment did or did not work.
Research links
- Official record on ClinicalTrials.govLast updated by the sponsor 30 Mar 2025.
- Derived from this study: PubMed 34967053Koy A, Kuhn AA, Huebl J, Schneider GH, van Riesen AK, Eckenweiler M, Rensing-Zimmermann C, Coenen VA, Krauss JK, Saryyeva A, Hartmann H, Haeussler M, Volkmann J, Matthies C, Horn A, Schnitzler A, Vesper J, Gharabaghi A, Weiss D, Bevot A, Marks W, Pomykal A, Monbaliu E, Borck G, Mueller J, Prinz-Langenohl R, Dembek T, Visser-Vandewalle V, Wirths J, Schiller P, Hellmich M, Timmermann L; STIM-CP investigators. Quality of Life After Deep Brain Stimulation of Pediatric Patients with Dyskinetic Cerebral Palsy: A Prospective, Single-Arm, Multicenter Study with a Subsequent Randomized Double-Blind Crossover (STIM-CP). Mov Disord. 2022 Apr;37(4):799-811. doi: 10.1002/mds.28898. Epub 2021 Dec 29.
Referral and contact
AzTrials does not enrol participants or take referrals. Contact the study team or a site listed below; they decide who can take part. This study is not recruiting at the moment.
Anne Koy, MD principal investigator
University Hospital Cologne, Germany
1 site in 1 country: see every site and its status.
Questions about this trial
What is this clinical trial studying?
An observational study of Dyskinetic Cerebral Palsy Due to Perinatal Hypoxia, run by University Hospital of Cologne at 1 site in Germany.
The full registered description is in the About this study section and the official record.
Who may be eligible to take part?
The sponsor lists 12 inclusion and 18 exclusion criteria. Eligibility is decided by the study team after screening, so read the full criteria and contact a listed site.
Is this clinical trial currently recruiting?
The record says: finished, as of the sponsor's last update on 30 Mar 2025. Status can change between updates, so confirm with the study contact before making plans.
Where is the study taking place?
The record lists 1 site in Germany. Whether a site is taking part right now should be confirmed with that site. See every site.
What are the possible benefits and risks?
They depend on the study and the treatment, and no study can promise a benefit. The study team explains the known risks during informed consent, before anyone joins; the record itself does not list them.
Are results available for this study?
The study is completed, but results are not available in the source record. That does not mean the treatment did or did not work.
How can a doctor refer a patient or contact the research team?
The record lists no contact. The official record names the sponsor, who can be asked directly. AzTrials does not enrol participants or take referrals.
What does the primary outcome measure?
Caregiver Priorities and Child Health Index of Life with Disabilities (CPCHILD) (time frame: CPCHILD 12 months after DBS). It is what the study was designed to measure, not a finding.
Where can I read the original study information?
On the ClinicalTrials.gov record for NCT02097693, which also lists 1 linked publication.
Does a listing mean the treatment is approved or proven to work?
No. A listing means the study is registered. It does not show that the treatment is safe, works, or is approved by a regulator.
How often is this information updated?
AzTrials copies changed records from ClinicalTrials.gov every night and reloads the whole registry every week. The sponsor last updated this record on 30 Mar 2025.