NCT06352268

Brief Summary

Dystonia is a rare syndrome with varying etiologies. Similarly, tremor conditions refractory to medical management and disabling that they need surgical interventions are rare in our setting. So far there are no randomized controlled trials of pallidotomy for management of dystonia. There is scant literature on the long term efficacy and safety of Pallidotomy, thalamotomy and other such lesioning procedures in the management of movement disorders. The current literature is significantly plagued by publication bias as case reports with successful outcomes are likely to be selectively published in journals or conference abstracts. Lesioning procedures though seem to be effective are often considered to be risky, especially bilateral pallidotomy is not preferred by several centres. However, our center routinely performs simultaneous bilateral pallidotomy. To generate long term data on the efficacy and safety of lesioning procedures in rare diseases like dystonias especially the effect of functional neurosurgery on varying etiologies of the disease, robust registries are required which collect data on all consecutive patients who undergo the procedure.

Trial Health

63
Monitor

Trial Health Score

Automated assessment based on enrollment pace, timeline, and geographic reach

Enrollment
250

participants targeted

Target at P75+ for all trials

Timeline
32mo left

Started Apr 2024

Longer than P75 for all trials

Geographic Reach
1 country

1 active site

Status
not yet recruiting

Health score is calculated from publicly available data and should be used for screening purposes only.

Trial Relationships

Click on a node to explore related trials.

Study Timeline

Key milestones and dates

Study Progress44%
Apr 2024Dec 2028

First Submitted

Initial submission to the registry

September 12, 2023

Completed
7 months until next milestone

First Posted

Study publicly available on registry

April 8, 2024

Completed
7 days until next milestone

Study Start

First participant enrolled

April 15, 2024

Completed
3.7 years until next milestone

Primary Completion

Last participant's last visit for primary outcome

December 31, 2027

Expected
1 year until next milestone

Study Completion

Last participant's last visit for all outcomes

December 31, 2028

Last Updated

April 8, 2024

Status Verified

April 1, 2024

Enrollment Period

3.7 years

First QC Date

September 12, 2023

Last Update Submit

April 4, 2024

Conditions

Outcome Measures

Primary Outcomes (2)

  • Long term functional outcomes

    Long term outcomes in patients undergoing lesioning procedures for the treatment of Dystonia - Burke Fahn Marsden Dystonia - Disability scale. Lesser score is better

    1 year

  • Long term functional outcomes

    Long term outcomes in patients undergoing lesioning procedures for the treatment of Parkinson Disease - Unified Parkinson Disease Rating Scale (UPDRS). Lesser score is better

    1 year

Secondary Outcomes (8)

  • Predictors of outcomes

    1 year

  • Demography

    Baseline at enrolment

  • Clinical features

    Baseline at enrolment

  • Laboratory findings

    Baseline at enrolment

  • Imaging features

    Baseline at enrolment

  • +3 more secondary outcomes

Study Arms (2)

Lesioning group

Participants who undergo pallidal, subthalamic or thalamic lesioning for the management of Dystonia, Parkinson's disease or essential tremors

Procedure: Pallidal, subthalamic or thalamic lesioning

Control group

Participants who were considered for pallidal, subthalamic or thalamic lesioning for the management of Dystonia, Parkinson's disease or essential tremors but went on to continue best medical management

Interventions

Radiofrequency, ultrasound guided or other lesioning procedures of the Globus pallidus interna, subthalamic nucleus or Vim nucleus of the thalamus for the management of Movement disorders

Lesioning group

Eligibility Criteria

Sexall
Healthy VolunteersNo
Age GroupsChild (0-17), Adult (18-64), Older Adult (65+)
Sampling MethodProbability Sample
Study Population

Patients with movement disorders such as Dystonia, Tremors or Parkinson's Disease who are being considered to undergo pallidal, subthalamic or thalamic lesioning procedures.

You may qualify if:

  • Patients with movement disorders admitted at the Neurology wards/attending clinics
  • Who are being considered for lesioning procedures
  • Of all ages and sexes

You may not qualify if:

  • · Those who deny consent

Contact the study team to confirm eligibility.

Sponsors & Collaborators

Study Sites (1)

All India Institute of Medical Sciences, New Delhi

New Delhi, National Capital Territory of Delhi, 110029, India

Location

Biospecimen

Retention: SAMPLES WITH DNA

Blood, serum CSF

MeSH Terms

Conditions

DystoniaParkinson DiseaseEssential Tremor

Condition Hierarchy (Ancestors)

DyskinesiasNeurologic ManifestationsNervous System DiseasesSigns and SymptomsPathological Conditions, Signs and SymptomsParkinsonian DisordersBasal Ganglia DiseasesBrain DiseasesCentral Nervous System DiseasesMovement DisordersSynucleinopathiesNeurodegenerative Diseases

Central Study Contacts

Arunmozhimaran Elavarasi, MD DM

CONTACT

Manjari Tripathi, DM

CONTACT

Study Design

Study Type
observational
Observational Model
COHORT
Time Perspective
PROSPECTIVE
Sponsor Type
OTHER
Responsible Party
PRINCIPAL INVESTIGATOR
PI Title
Assistant Professor

Study Record Dates

First Submitted

September 12, 2023

First Posted

April 8, 2024

Study Start

April 15, 2024

Primary Completion (Estimated)

December 31, 2027

Study Completion (Estimated)

December 31, 2028

Last Updated

April 8, 2024

Record last verified: 2024-04

Data Sharing

IPD Sharing
Will share
Shared Documents
STUDY PROTOCOL, SAP
Time Frame
From end of study to five years later
Access Criteria
To be provided after approaching through Institute Ethics committee, AIIMS New Delhi

Locations