PeVD delphi

Dear Reader,

With this information letter, we would like to ask if you are willing to participate in a scientific research. Participation is voluntary. You are receiving this letter because you are an expert in the field of Pelvic Venous Disorders (PeVD). This letter explains the nature of the research, what it means for you and what is expected of you should you decide to participate.

START the DELPHI here, after reading the participant information folder below. 

General information

This study is being conducted by Amsterdam UMC.

What is the purpose of this study?

Pelvic Venous Disorders (PeVD) are complex conditions involving venous reflux, obstruction, or congenital malformations within the pelvic venous system. Their diagnosis remains challenging due to overlapping symptoms, inconsistent terminology, and the lack of standardized diagnostic criteria.

To address these challenges, this study seeks to establish a multidisciplinary consensus on the terminology and diagnostic approach to reflux-dominant PeVD (PeVD V3), also referred to as the ovarian/uterine reflux–insufficiency phenotype.

The study will employ a modified Delphi process, a structured method designed to achieve expert consensus through multiple rounds of anonymous input and feedback. Specialists from gynaecology, vascular surgery, interventional radiology and angiology will be invited to participate. The Delphi process will build upon insights gathered from an initial multidisciplinary focus group that will identify key challenges and unmet needs in clinical practice.

Ultimately, this Delphi study aims to provide a unified, expert-endorsed foundation for the diagnosis of PeVD V3, facilitating clearer communication between specialties and improving clinical decision-making and research consistency in the field.

What happens if you take part in the study?

If you agree to take part, you will participate in an online Delphi process aimed at reaching expert consensus on the nomenclature and diagnostic criteria for reflux-dominant Pelvic Venous Disorders (PeVD V3).

The Delphi will consist of three to four rounds of online questionnaires, where you will rate statements and provide feedback based on your professional experience. After each round, anonymized group results will be shared with all participants to inform the next round.

If consensus is not reached after the questionnaire rounds, a final digital focus group may be held to discuss remaining points of disagreement. This session may be audio-recorded using a secure device from Amsterdam UMC to ensure accurate transcription. Recordings will be transcribed, anonymized, and deleted immediately after transcription.

No personal identifiers or biological materials will be collected. Any information you share will be processed confidentially and anonymously.

Each Delphi round will take about 15–20 minutes, and the optional focus group about 30–45 minutes. After the study, you will receive a summary of the findings for review and feedback (member checking). Participation is voluntary and no risks or discomfort are expected.

What does participation mean for you?

You will not receive any direct benefit from participating in this study.

However, your participation may contribute to greater knowledge about the diagnosis of Pelvic Venous Disorders.

If you do not want to participate or wish to withdraw from the study.

Participation in the study is entirely voluntary.

You may also decide to withdraw from the study at any time. You do not need to provide a reason for withdrawing. However, you must inform the researcher immediately if you choose to stop.

The data collected up to that point will still be used for the study.

What do we do with your data?

If you participate in the study, you also give consent for your data to be collected, used and stored.

Why do we collect, use and store your data?

We collect, use and store your data in order to answer the research questions.
The aim is to gain more insight into current diagnostic practices for Pelvic Venous Disorders (
PeVD) and how these might be improved.

We intend to publish the results of the study.

The results may be published in scientific journals or presented at conferences. In all publications, you will not be personally identifiable (if a co-authorship is not desired).

How do we protect your privacy?

To protect your privacy, we will assign a code to your data. All of your data will only be labeled with this code.

The data that directly refers to you will no longer be used. The key to the code will be kept in a secure place at the hospital. Only the researcher and members of the research team know which code belongs to you. Whenever we process or share your data, we will only use this code. In reports and publications about the study, no one will be able to trace the information back to you.

How long do we keep your data?

We will keep your data for a maximum of 10 years at Amsterdam UMC.

May we contact you again after this study for a follow-up study?

When this study is completed, we may conduct a follow-up study.
We would like to contact you at that time to ask if you would be willing to participate again. You can indicate on the consent form whether you give us permission to do so.

Would you like to know more about your privacy?

You may wish to receive an electronic copy of your personal data used in the study. That is possible. You can ask the researcher for this.
Would you like to know more about your rights regarding the processing of personal data? Then please visit: https://www.autoriteitpersoonsgegevens.nl/nl/over-privacy/persoonsgegevens

Do you have questions about your rights? Or do you have a complaint about your privacy? Then please contact the person responsible for processing your personal data.

If you have privacy-related complaints, we recommend discussing them first with the research team.
You can also contact the Data Protection Officer of Amsterdam UMC at
privacy@amsterdamumc.nl or submit a complaint to the Dutch Data Protection Authority (Autoriteit Persoonsgegevens).

Will you receive compensation for participating?

You will receive no compensation.

Do you have questions?

This study has been reviewed by the non-WMO review committee of Amsterdam UMC.
According to this committee, the study does not fall under the Medical Research Involving Human Subjects Act (WMO).

If you have any questions about this study, you can contact the physician-researcher Drs. Naila Loudini from Amsterdam UMC.

Do you have a complaint?

If you have a complaint, please discuss it with the researcher.  If you would prefer not to do so, you can contact the Patient Services Support staff.

Contact details:

Drs. Naila Loudini, MD, PhD candidate, Gynecology and Obstetrics, Amsterdam UMC

n.loudini@amsterdamumc.nl

+31205663654

Contact information privacy officer

Phone number: 020-5666440,  Email: PAZO-AMC@amsterdamumc.nl

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