RecruitingOBSERVATIONAL

A Registry Study on HIV-related Lymphoma

This study is gathering important information about people in the UK who have both HIV and lymphoma, which is a type of cancer that affects the immune system. Researchers are collecting details about people's health, the specific type of lymphoma they have, the treatments they receive, and how they respond to those treatments. This information helps doctors understand more about how HIV-related lymphoma behaves, which treatments work best, and what to expect for people living with these conditions. It's a 'registry study,' meaning it gathers existing medical information and some ongoing updates, rather than trying new treatments. The goal is to improve care for everyone affected by HIV-associated lymphoma today and in the future.

At a glance

Status

Recruiting

Sponsor

Rotkreuzklinikum München gGmbH

Enrolment target

300

Start

25 Aug 2021

Estimated completion

31 Aug 2029

What is this study about?

This study is like a large, organised collection of information specifically about people who have both HIV and a type of cancer called lymphoma. Lymphoma affects part of your immune system, and sometimes it can be linked to having HIV. The researchers want to learn more about how this cancer affects people with HIV, especially since we now have very effective HIV treatments (called cART, or combination antiretroviral therapy).

They are gathering details on various things: what kind of lymphoma people have, what treatments they receive (like chemotherapy), and how well those treatments work. They're also looking at any side effects people experience from their treatments. By looking at information from many different people, the study hopes to get a clearer picture of the best ways to care for individuals with HIV-related lymphoma.

The main aim is to understand these conditions better in the 'real world,' using data from hospitals and clinics where people are already receiving care. This information will help doctors and healthcare professionals make more informed decisions and potentially improve the care and treatment for all people in the UK living with HIV-associated lymphoma.

Key takeaways

It's a study collecting information on people with HIV and lymphoma.
It doesn't involve new treatments, just gathers existing medical data.
Your personal details will be kept private.
The aim is to improve understanding and care for HIV-related lymphoma.
You must have been diagnosed with HIV and lymphoma since 2010.
Participation helps future patients with these conditions.

Who may be eligible?

To be included in this study, you would need to have been diagnosed with lymphoma (either non-Hodgkin or Hodgkin lymphoma) and also have an HIV infection around the time of your cancer diagnosis. Your lymphoma diagnosis needs to have happened since January 1st, 2010, and you must be 18 years old or over.

It's important that you are able to understand the study and provide your written consent to share your de-identified health information. This means your personal details would be kept private, but your medical information could be used for the study.

You wouldn't be able to join if your HIV diagnosis was more than three months after your lymphoma diagnosis began. Also, if there are concerns about you being able to attend follow-up appointments for the ongoing part of the study, you might not be eligible. This is to make sure the researchers can gather complete and reliable information.

Quick self-check

Do I have a confirmed diagnosis of non-Hodgkin or Hodgkin lymphoma?
Was I diagnosed with HIV around the same time as my lymphoma?
Was my lymphoma diagnosed on or after January 1st, 2010?
Am I 18 years old or older?
Am I willing to provide written permission for my de-identified medical data to be used?

This is a guide only — the research team will confirm whether you can take part.

What does participation involve?

Taking part in this study would involve sharing your existing and future medical information about your HIV and lymphoma. This study doesn't involve new treatments or extra tests. Instead, the doctors looking after you would share information from your medical records with the study team. This information would be made anonymous so that your personal details are removed before being sent away. The study team would collect details about your cancer type, treatments you receive (which would be chosen by your doctor based on standard guidelines), and how you respond over time. There are no specified visits beyond your usual medical care, or extra medication to take as part of this study. Your participation simply allows your health journey regarding HIV and lymphoma to contribute to a larger pool of knowledge, helping others in the future.

Potential risks and benefits

There are no direct risks to your health from participating, as this study only collects information from your existing medical care and doesn't involve any new treatments or procedures. Your personal information will be kept private and anonymised. A potential benefit is contributing valuable information that could help doctors better understand and treat HIV-related lymphoma in the future, improving care for others. You are free to withdraw your consent and participation at any time without affecting your medical care.

Locations (6)

Red Cross Hospital Munich
Munich, Germany· Recruiting
University Hospital Cologne
Cologne, Germany· Recruiting
Amsterdam University Medical Centers
Amsterdam, Netherlands· Not yet recruiting
Hospital de la Santa Creu i Sant Pau
Barcelona, Spain· Recruiting
Hospital Universitario de Salamanca
Salamanca, Spain· Recruiting
University Hospital of Wales
Cardiff, United Kingdom· Not yet recruiting

Common questions

What is a 'registry study'?

A registry study collects information about a group of people with a specific health condition to learn more about it over time.

Will I receive new treatments in this study?

No, this study only collects information about the standard treatments you are already receiving; it doesn't involve trying new ones.

How will my privacy be protected?

Your personal details will be removed from your health information before it is used in the study, so you can't be identified.

What kind of information are they collecting?

They're collecting details about your type of lymphoma, your HIV status, treatments you receive, and how you respond to those treatments.

Who is running this study?

The main data collection is managed by a centre in Germany, working with hospitals and clinics, including those in the UK.

How to find out more

Marcus Hentrich, MD

marcus.hentrich@swmbrk.de +49 89 1303 4372 Official trial record

Always speak to your GP or specialist before deciding to take part in a study.