RecruitingOBSERVATIONAL

Sickle-cell Disease Registry of the GPOH

This study is setting up a registry for people living with sickle cell disease in German-speaking countries like Germany, Austria, and Switzerland. Sickle cell disease is a common inherited condition, and catching it early and treating it well can prevent serious problems. The registry will collect important details about patients, including their health information, genetic makeup, and the treatments they receive. The main goal is to find out what factors predict how the disease will progress over time. Ultimately, this information will help make sure that all newborns are screened for sickle cell disease and will update the national guidelines for how to best care for patients in Germany. Several university hospitals are working together on this important project, and more hospitals are encouraged to join.

At a glance

Status

Recruiting

Sponsor

University Hospital Heidelberg

Enrolment target

1,000

Start

15 Dec 2016

Estimated completion

31 Dec 2040

Sickle Cell Disease

What is this study about?

Sickle cell disease is a common condition that people are born with, where their red blood cells are an unusual crescent (sickle) shape. These cells can block blood flow, leading to pain and other serious health problems. However, if the disease is found early and treated properly, many of these severe complications can be avoided.

This study is creating a special record, called a registry, for people with sickle cell disease in Germany, Austria, and Switzerland. Think of it like a carefully organised database. Doctors involved in this project want to learn more about how many people have sickle cell disease, understand their health in detail (including their genetics), and track the treatments they receive. By collecting all this information, they hope to discover what might predict how the disease will progress for different individuals.

The findings from this registry are really important. They will provide strong evidence to help ensure that all newborn babies are tested for sickle cell disease, so it can be identified as early as possible. The results will also be used to update the official guidelines in Germany for how doctors should provide the best care for patients with this condition. Several major university hospitals are working together on this project, and they welcome more hospitals to join to gather even more valuable information.

Key takeaways

A registry gathering health information on sickle cell disease patients.
Aims to improve understanding and treatment of the condition.
Information will help with newborn screening and updating care guidelines.
No extra tests or visits required for participants.
Open to patients (0-100 years old) with confirmed sickle cell disease in Germany, Austria, or Switzerland.
Your information can help future patients, but joining is optional.

Who may be eligible?

To be part of this study, you must have sickle cell disease, and a doctor must have confirmed this through blood tests or genetic tests. You also need to live in Germany, Austria, or Switzerland at the moment. Your doctor will ask for your permission to include your information in the registry.

This study is open to both children and adults, from birth up to 100 years old, and includes everyone, regardless of whether they are male or female. It covers all types of sickle cell disease, including the most common forms and some rarer types.

You cannot join the registry if you only carry the sickle cell 'trait' (meaning you have one sickle cell gene but don't have the disease itself). The study is specifically for those who have the full sickle cell disease.

Could this study suit you?

Answer these quick questions to see if you may be eligible. This is a guide only — the research team makes the final call.

Do you have sickle cell disease, confirmed by a doctor?
Do you currently live in Germany, Austria, or Switzerland?
Are you between 0 and 100 years old?
Are you willing to give your permission for your medical information (from your regular care) to be used anonymously?

Answer every question to see your result.

What does participation involve?

If you decide to participate, the study won't involve any extra visits or medical tests just for this registry. Instead, your doctors will collect information from your regular medical appointments and existing health records. This includes details about your specific type of sickle cell disease, your genetic information if available, and the treatments you are already receiving. This information will then be added to the registry. The study aims to follow how your disease progresses over time, using the information gathered during your routine care. You won't be asked to take any new medicines or undergo any experimental treatments as part of this registry.

Potential risks and benefits

There are no direct medical risks from participating in this registry, as it only involves collecting existing medical information from your routine care. The main benefit is that your anonymised information will help contribute to a better understanding of sickle cell disease. This knowledge can lead to improved care, earlier diagnosis for newborns, and updated treatment guidelines for all patients in the future. You have the right to withdraw your consent and have your information removed from the registry at any time, without it affecting your medical care.

Locations (1)

Center for Child and Adolescent Medicine, University Medical Center Heidelberg
Verified postcode
Heidelberg, Germany· Recruiting

Common questions

What is a registry in medical research?

A registry is a secure collection of medical information from many people with the same condition. It helps researchers learn more about the condition over time.

Will this study involve extra doctor visits for me?

No, this study does not require any extra doctor visits or tests. Your doctors will use information from your regular appointments.

Will my personal information be kept private?

Yes, all your personal information will be kept private and anonymised. This means your name and other identifying details won't be shared outside of your care team.

Who is funding this research?

This registry is supported by the Society for Paediatric Oncology/Haematology, with several university hospitals working together on it.

Can I still get good medical care if I don't join?

Yes, joining or not joining the registry will not affect the quality of your medical care. This is completely voluntary.

How to find out more

Joachim Kunz, Dr.

joachim.kunz@med.uni-heidelberg.de 06221 56 4555 Official trial record

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