Diagnosis and Treatment availability within Europe Survey

This survey, conducted as part of the EAHAD Working Group on von Willebrand disease (VWD), aims to evaluate the availability of diagnostic tools and treatment options across European Medical Centres. It will collect information on current practices, resources, and access to care. The results will help identify gaps and variations between centres and support efforts to improve diagnosis and treatment across Europe.

1.In what country do you work?(Required.)

2.Please provide the name of your centre:(Required.)

3.Please indicate the type of your centre:(Required.)

Comprehensive Care Haemophilia Centre

Haemophilia Treatment Centre

General Hematology

Other (please specify)

4.Please indicate the approximate annual number of VWD patients diagnosed (first time):(Required.)

5.Please indicate the approximate annual number of VWD patients managed (follow-up):(Required.)

6.Do you use standardized bleeding assessment tools (ISTH-BAT) for the diagnosis/assessment of VWD?(Required.)

Yes

No

7.What are the main challenges in diagnosing VWD in your center? (select all that apply)(Required.)

Limited availability of specialized laboratory assays

Difficulty in interpretation of laboratory results and VWD subtyping

Limited access to genetic testing

Variability of VWF levels (e.g., physiological or external factors)

Limited clinician expertise or awareness

Organizational or resource constraints (e.g., time, infrastructure)

Reimbursement or cost-related barriers

Other (please specify)

9.Which platelet-dependent VWF activity do you use routinely for VWD diagnosis? (please select all that apply)(Required.)

VWF:RCo

VWF:GPIbR

VWF:GPIbM

VWF:Ab

10.Do you use VWF genetic testing for diagnosis?(Required.)

Yes

No

Sometimes

11.Which method do you use for VWF genetic testing? (if you clicked "no" on the previous question discard this one)

Sanger sequencing (PCR-based)

Targeted gene panel sequencing (NGS)

Whole exome sequencing (WES)

Whole genome sequencing (WGS)

Multiplex ligation-dependent probe amplification (MLPA)

Long-read sequencing (e.g., nanopore / PacBio)

Copy number variation (CNV) analysis

Unknown / Outsourced (method not specified)

12.Which VWF activity (e.g., VWF:GPIbR, VWF:GPIbM, or VWF:RCo) to VWF:Ag ratio cut-off do you use to differentiate type 1 from type 2 VWD?(Required.)

0.6

0.7

Other (please specify)

13.For type 2A VWD which specialized assay(s) do you use to establish or confirm a diagnosis? (please select all that apply)(Required.)

14.For type 2B VWD which specialized assay(s) do you use to establish or confirm a diagnosis? (please select all that apply)(Required.)

15.For type 2M VWD which specialized assay(s) do you use to establish or confirm a diagnosis? (please select all that apply)(Required.)

16.For type 2N VWD which specialized assay(s) do you use to establish or confirm a diagnosis? (please select all that apply)(Required.)

VWF:FVIIIB

VWF genetic testing

17.For suspected type 1C VWD (accelerated VWF clearance), which approach do you use in your center? (please select all that apply)(Required.)

Measure VWFpp/VWF:Ag ratio

Perform a desmopressin (DDAVP) trial

Genetic testing