Spinal Dural Arteriovenous Fistula International Data and Outcomes Registry (SPIDER)

SPIDER - Spinal Dural Arteriovenous Fistula International Data and Outcomes Registry

Given the lack of large multicenter datasets in the context of Spinal arteriovenous fistula, the strength of the evidence surrounding this rare disease is limited. SPIDER hence aims to address that by compiling patient-level data from centers all around the world.

Study Overview

• Status: Recruiting
• Conditions: Spinal Dural Arteriovenous Fistula

Detailed Description

Type 1 or dural spinal arteriovenous fistulas (SDAVFs) are the most common spinal vascular malformation but remain frequently underdiagnosed due to their insidious onset and nonspecific clinical presentation. Delayed diagnosis is common and often results in progressive, and sometimes irreversible, myelopathy. Despite advances in imaging and treatment, there remains significant variability in diagnostic timelines, treatment strategies (endovascular, surgical, or combined), and reported outcomes across institutions.

Existing literature is largely limited to single-center retrospective series or small cohorts, often underpowered to evaluate predictors of outcome, recurrence, and the impact of diagnostic delay. Furthermore, direct comparisons between treatment modalities and long-term functional outcomes using standardized clinical scales are limited.

The SPIDER registry is designed to address these gaps by creating the largest international, multicenter dataset of patients with spinal dural AVFs. By pooling de-identified data from high-volume centers worldwide, this study aims to provide robust, generalizable evidence to inform clinical decision-making and optimize patient outcomes.

• Study Type: Observational
• Enrollment (Estimated): 1000

Contacts and Locations

• Study Contact: Name: Pascal Jabbour, MD; Phone Number: 215-955-7000; Email: pascal.jabbour@jefferson.edu

Study Locations

• United States
  • Pennsylvania
    • Philadelphia, Pennsylvania, United States, 19102
      • Recruiting
      • Thomas Jefferson University Hospital
      • Contact: Victor Gabriel El-Hajj, MD; Phone Number: 215-955-7000; Email: victorgabriel.el-hajj2@jefferson.edu

Participation Criteria

Eligibility Criteria

• Ages Eligible for Study: Child; Adult; Older Adult
• Accepts Healthy Volunteers: No

• Sampling Method: Non-Probability Sample

Study Population

The registry will include patients from 40 different hospitals in 20 different countries.

Description

Inclusion Criteria:

• Type 1 spinal dural arteriovenous fistula, confirmed on imaging
• Surgically or endovascularly treated
• At least 1 available primary outcome

Study Plan

How is the study designed?

What is the study measuring?

Primary Outcome Measures

Outcome Measure	Measure Description	Time Frame
Treatment success	Complete surgical/endovascular obliteration of the fistula	Recorded at the end of the embolization or surgery.
Recurrence	Fistula recurrence	Time-to-event Outcome Measures. Estimated period of time over which the event is assessed: on average 1.5 years after surgery.
Status of symptoms at last clinical follow-up	Improved, unchanged, or worsened pain, sensory, and motor symptoms	Time-to-event Outcome Measures. Estimated period of time over which the event is assessed: on average 1.5 years after surgery.
Modified Aminoff-Logue Scale	Gait and bowel/bladder score	Time-to-event Outcome Measures. Estimated period of time over which the event is assessed: on average 1.5 years after surgery.
Modified Rankin Scale	Measure of functional independence	Time-to-event Outcome Measures. Estimated period of time over which the event is assessed: on average 1.5 years after surgery.
Mortality		Time-to-event Outcome Measures. Estimated period of time over which the event is assessed: on average 1.5 years after surgery.

Collaborators and Investigators

• Sponsor: Thomas Jefferson University

Study record dates

Study Major Dates

• Study Start (Actual): January 5, 2026
• Primary Completion (Estimated): May 1, 2026
• Study Completion (Estimated): May 1, 2026

Study Registration Dates

• First Submitted: April 22, 2026
• First Submitted That Met QC Criteria: May 4, 2026
• First Posted (Actual): May 8, 2026

Study Record Updates

• Last Update Posted (Actual): May 8, 2026
• Last Update Submitted That Met QC Criteria: May 4, 2026
• Last Verified: May 1, 2026

More Information

Terms related to this study

• Keywords: multicenter; registry; spinal dural arteriovenous fistula; international; spinal arteriovenous malformation; spinal AVF; sdAVF
• Other Study ID Numbers: SPIDER iRISID-2026-0174

Plan for Individual participant data (IPD)

• Plan to Share Individual Participant Data (IPD)?: NO
• IPD Plan Description: Data cannot be shared due to its multicenter nature.

Drug and device information, study documents

• Studies a U.S. FDA-regulated drug product: No
• Studies a U.S. FDA-regulated device product: No