Question 1

What is the purpose of the IMP Registry?

Accepted Answer

IMP is an extremely rare and poorly understood type of ectopic pregnancy. Due to its rarity, IMP is difficult to study systematically, and there are currently no evidence-based diagnostic or management guidelines. The risks—including uterine rupture, haemorrhage, and loss of fertility—can be severe, particularly when diagnosis is delayed or misinterpreted.

To address this gap, the IMP Registry has been developed to collect anonymised clinical data prospectively from healthcare professionals managing cases of IMP. The goals of the registry are to:
Improve understanding of the natural history, risk factors, and clinical presentation of IMP
Identify effective diagnostic and treatment strategies
Support evidence-based clinical decision-making
Inform national and international management guidelines
Ultimately improve patient safety, fertility preservation, and health outcomes

By capturing real-world data on the diagnosis, progression, and treatment of IMP, the registry seeks to promote research and establish a more robust foundation for managing this high-risk condition.

Question 2

Who can contribute to the IMP Registry?

Accepted Answer

Healthcare professionals managing patients with confirmed or suspected IMP are eligible to participate.

Question 3

How can healthcare professionals contribute to the registry?

Accepted Answer

The steering committee managing the registry will actively encourage healthcare professionals to submit data. Clinicians can request secure access to the web-based data entry system by contacting uclh.impregistry@nhs.net or using the contact page on this site. Once registered, participants will receive training materials and ongoing support to ensure accurate and consistent data entry.

The registry collects only anonymised clinical information, which is submitted through a secure online platform. Clinicians contribute by answering a series of standardised questions designed to ensure high-quality, reliable, and comparable data across all cases.

Question 4

How is patient information handled?

Accepted Answer

All data entered into the registry is anonymised. No personally identifiable information is collected. Data is stored securely and managed in compliance with data protection regulations.

Question 5

How will the data be used?

Accepted Answer

The data will be used to:
Evaluate outcomes and complications associated with IMP
Identify patterns in diagnosis and treatment
Inform research studies
Support clinical guideline development

Only confirmed cases of IMP will be kept in the database. All submissions will be reviewed by an expert medical team, and cases that are not IMP will be removed. We will discuss with contributors if we determine that a case is not IMP and explain our assessment. Patient confidentiality will always be protected.

Question 6

Who manages the IMP Registry?

Accepted Answer

The IMP Registry is managed by a steering committee made up of relevant stakeholders, including researchers specialising in IMP, healthcare professionals experienced in diagnosing and treating IMP, individuals with personal experience of IMP, and patient advocates who support those affected by the condition. This diverse committee ensures ethical governance, maintains data quality, and oversees the appropriate and responsible use of the registry’s data.

Question 7

Who can access the data in the registry?

Accepted Answer

Only authorised personnel at participating centres can enter and access data from their own institution. Access to combined or broader datasets is restricted to a limited number of authorised members of the steering committee to ensure data security and confidentiality.

Question 8

Can patients access the registry?

Accepted Answer

At this time, patients cannot access the registry directly. However, feedback from patients is welcome. If you would like to share your experience or ask questions, please contact the registry team at uclh.impregistry@nhs.net.

Question 9

Is this the first IMP registry?

Accepted Answer

Yes. This is the first registry dedicated specifically to intramural pregnancy. It represents a major step toward improving understanding, treatment, and outcomes for this rare condition.

Question 10

How will the registry benefit patients?

Accepted Answer

By collecting and analysing real-world data, the registry will aim to help:
Identify best practices for diagnosis and treatment
Reduce delays in diagnosis
Minimise complications
Improve outcomes for women affected by this high-risk condition

This evidence will support clinicians in making informed decisions and help guide future research and clinical guidelines.

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