Spinal Dural Arteriovenous Fistula International Data and Outcomes Registry
For patients and families
In plain language
An automatic summary of structured registry data. It is an orientation aid, not a substitute for the official protocol or a physician assessment.
- What is being studied
- This is an observational study: the protocol does not assign a study treatment.
- Who it may be relevant to
- Registry conditions: Spinal Dural Arteriovenous Fistula. Basic parameters: No limits · All.
- What needs checking
- Age, condition and sex are only basic indicators. Prior treatment, laboratory values and other mandatory requirements appear in the eligibility criteria below.
- Where it takes place
- United States
- Next step
- Save the trial, show it to the treating physician, and confirm current recruitment with the study center. Costs, documents and travel →
Unsure about the terms? Read our patient guide →
Official title
SPIDER - Spinal Dural Arteriovenous Fistula International Data and Outcomes Registry
Overview
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.
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.
Primary outcome measures
- Treatment success [Time frame: Recorded at the end of the embolization or surgery.]
- Recurrence [Time frame: 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 [Time frame: 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 [Time frame: 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 [Time frame: Time-to-event Outcome Measures. Estimated period of time over which the event is assessed: on average 1.5 years after surgery.]
- Mortality [Time frame: Time-to-event Outcome Measures. Estimated period of time over which the event is assessed: on average 1.5 years after surgery.]
Eligibility criteria
Inclusion criteria
- Type 1 spinal dural arteriovenous fistula, confirmed on imaging
- Surgically or endovascularly treated
- At least 1 available primary outcome
Criteria are shown verbatim from the registry (in English). Final eligibility is always assessed by the study center.
Healthy volunteers: No
Study design
- Observational model
- Cohort
Study locations
United States · 1 center
- Thomas Jefferson University Hospital — Philadelphia
Identifiers
NCT: NCT07574645 · SPIDER iRISID-2026-0174