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Status unknownNCT03499366Updated May 11, 2018

European Paediatric AFM Associated With EV-D68 Follow-up Study.

An interventional study of HFMS, MRC, ACTIVLIM, PedsQl-4.0 in Flaccid Hemiplegia, Flaccid Paraplegia and Flaccid Tetraplegia, Unspecified, sponsored by Oslo University Hospital. Status unknown at 1 site in Norway. Open to participants aged 1 Day to 18 Years. Per ClinicalTrials.gov, last updated 2018-05-11.

Sponsored by Oslo University Hospital · Not applicable, Interventional, and Diagnostic

The sponsor has not verified this record recently (last verified May 2018), so the status shown — last known as Recruiting — may be out of date.
Phase
Not applicable
Study type
Interventional
Enrollment
40
Allocation
Not applicable
Ages
1 Day to 18 Years
Sex
All
01

Study summary

The study is a follow-up study on children with acute flaccid paresis associated with enterovirus D68 infection. Only children living in Europe are eligible. The study aim is to clarify the outcome of the disease and investigate possible clinical correlation with outcome, including initial severity, demographic characteristics, treatment and MRI findings.

Read the detailed description

Title: Clinical observational follow-up study of children with Acute Flaccid Myelitis associated with EV-D68 infection- a cross European collaboration.

Study objectives: To study the clinical outcome and function of patients with Acute Flaccid Myelitis associated with enterovirus (EV)-D68 infection after 1 to 3 years, in order to assist clinicians in providing prognoses for patients and to guide further investigation.

Primary objective will be:

  • Functional assessment using the Hammersmith Functional Motor Scale (HFMS) -score at follow up; 1, 2 and three years depending on time of debut

Secondary objectives are to describe these secondary outcomes and their changes over time, from onset to 1, 2 and 3 years, depending on time of debut:

  • Medical Research Council (MRC) sum score at acute illness and at 1, 2 and 3 years follow up depending on time of debut as well as possible improvements over time
  • MRC score in the most affected joint at acute illness and at 1, 2 and 3 years follow up depending on time of debut, as well as possible improvements over time ACTIVLIM functional score at 1, 2 and 3 years follow up depending on time of debut
  • Quality of life at 1, 2 and 3 years follow up depending on time of onset measured using the Paediatric Quality of Life Inventory (PedsQL) 4.0.
  • Number of days needing intensive care (range and mean)
  • Number of days needing mechanical ventilation (range and mean)
  • Number of deaths will be reported
  • Number of complete recoveries will be reported

Explorative objectives:

  • Exploring demographic parameters and how it relates to outcome (HFMS/ MRC-score/ ACTIVLIM/ PedsQL 4.0)
  • Exploring different treatments and how it relates to outcome (HFMS/ MRC-score/ ACTIVLIM/ PedsQL 4.0)
  • Exploring different clinical parameters and how it relates to outcome (HFMS/ MRC-score/ ACTIVLIM/ PedsQL 4.0)
  • Exploring time aspects of the recovery process (individual MRC-score and MRC sum score changes).
  • Characteristics on MRI will be explored with regards to outcome measures (HFMS/ MRC-score/ ACTIVLIM/ PedsQL 4.0)
  • In cases with repeated MRI scans, changes will be described
  • In cases with repeated neurophysiological examinations, changes will be described.

Clinical study/intervention design: This is a clinical observational study aiming at including all registered European AFM-EVD68 patients less than 18 years of age.

Safety endpoints: There is no treatment given in this study. If we become aware of important safety issues concerning included patient's treatment regimens or supportive treatment the responsible treating physician well be informed promptly via e-mail.

Duration of study: The study is intended to produce follow up data every year for two years. Inclusion will begin in March 2018 and the study terminates in March 2020. Analysis of data might hereafter continue for one year.

Follow-up: The study is a follow up study itself. Follow up will be done as close to 1 year after onset as possible and hereafter every year for minimal 2 years.

The study is intended as a clinical follow-up study exploring the outcome of patients with acute flaccid paresis associated with enterovirus D68. The patients will undergo a standard neurologic examination and assessment using Hammersmith functional motor scale expanded. The parents/ child will be asked to fill out a form concerning quality of life and activity of daily living. There will be no painful or invasive procedures and the duration of each visit can be expected to be approx. 4 hours.

02

Conditions studied

  • Flaccid Hemiplegia
  • Flaccid Paraplegia
  • Flaccid Tetraplegia, Unspecified
  • Enterovirus D68
  • Myelitis, Infectious

Keywords

  • enterovirus D68
  • AFP
  • AFM
  • EV-D68
  • acute flaccid myelitis
  • acute flaccid paresis
03

Who can participate

Ages eligible
1 Day to 18 Years
Sexes eligible
All
Accepts healthy volunteers
No

Inclusion criteria

  • Acute flaccid paresis (AFP) at onset, and
  • Enterovirus D-68 polymerase chain reaction (PCR) positive in any specimen in a timely sample (+/- 3 weeks from onset of paresis), and
  • Age \<18 years at onset, and
  • Magnetic resonance imaging (MRI) of spine and brain at onset with signs of myelitis.

Exclusion criteria

Exclusion Criteria:

  • Major trauma
  • central nervous system (CNS) malignancy
  • Bleeding or infarctions in CNS
  • Previous demyelinating disease
  • Other infections cause of myelitis is more likely
  • Patient and/or legal guardian is not able/willing to sign the consent form
04

Study design

Phase
Not applicable
Primary purpose
Diagnostic
Allocation
Not applicable
Intervention model
Single group
Masking
None (open label)
Enrollment
40 participants (estimated)

Interventions

  • Diagnostic testHFMS, MRC, ACTIVLIM, PedsQl-4.0

    Clinical performance tests, quality of life, activity of daily life form.

05

What researchers measure

Primary outcomes

  1. Total Hammersmith Functional Motor scale- score at follow-up

    O'Hagen, J. M., et al. (2007). "An expanded version of the Hammersmith Functional Motor Scale for SMA II and III patients." Neuromuscul Disord 17(9-10): 693-697.Neurol. 2003;7(4):155-9. The scale is a 33 items evaluation (0, 1 or 2 points in each item) and results in an overall functional score. Range: 0-66, with a higher score reflecting better performance. No sub-scores will be used.

    Time frame: 1 year

06

Study locations

1 of 1 sites recruiting
  • Oslo University Hospital
    Oslo, Norway
    Recruiting
07

References and documents

Individual participant data

Plan to share: Undecided

No publications or documents are linked to this record.

08

Registry details

Key details

Study ID
NCT03499366
Lead sponsor
Oslo University Hospital
Collaborators
University Medical Center Groningen, National Health Service, United Kingdom
Responsible party
Helle Cecilie Viekilde Pfeiffer (Researcher, Pricipal investigator, PhD, Department of Child Neurology, Oslo University Hospital) — Principal investigator
First posted
Apr 17, 2018
Start date
Apr 9, 2018
Primary completion
Apr 9, 2020 (estimated)
Completion
May 1, 2020 (estimated)
Last update
May 11, 2018

Study contacts

Anette Ramm-Pettersen, MD, PhD
Contact
arammpet@ous-hf.no
0047 23070000
Anette ramm-Pettersen, MD, PhD
study chair · Head of department

Oversight

Data monitoring committee
No
FDA-regulated drug
No
FDA-regulated device
No
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