Usually, the attending physician directly submits their patients to our registry. However, there are occasions where this isn’t feasible due to organizational constraints. For instance, the treating hospital might not be connected to our registry network, or there may be a lack of personnel to carry out the registration.

In such instances, you have the option to register yourself or your child in our registry, significantly supporting our research efforts. Self-registration involves 8 simple steps, which are outlined below. If you have any questions, feel free to contact us anytime.

Register in 8 Simple Steps

Getting Started

Getting Started

Contact us! We will then arrange a telephone appointment for the medical consultation.

Joint Telephone Call

Joint Telephone Call

We will speak with you on the phone for approximately 30 minutes at the agreed time. We’ll explain exactly what we’re researching and show you which research registries or accompanying projects are suitable for you personally. Feel free to contact us if you have any questions!

The Enrollment Package

After the call, we will send you the enrollment package.

The contents of the enrollment package may vary slightly depending on the CPS you have. For example, the oral mucosal swab kit is not always included. In addition, some recipients receive several patient information and consent forms – for example for the CPS registry and the accompanying projects “Liquid Biopsy” and “ADDRess”.

Signing the Consent Forms

Signing the Consent Forms

Please sign the consent forms. If you have any further questions, please feel free to contact us at any time. You will also find detailed explanations in the enclosed patient information.

Compiling Your Medical Documents

Compiling Your Medical Documents

To register, we require copies of all relevant medical documents, including doctor’s letters, human genetic reports, and imaging data. If you’re unsure which documents are needed, please don’t hesitate to contact us!

Returning Documents

Returning Documents

Please send us the original signed consent forms and a copy of your medical reports. Simply use the prepaid envelope included in the enrollment package.

Returning Biomaterial

Returning Biomaterial

Have your doctor fill the tubes at your next routine blood test. You can also swab your own mouth using the kit provided. Alternatively, your doctor can do this for you. Please return both the blood tubes and the buccal swab to us in the prepaid envelope.

Annual Follow-Up Examination

From now on, please send us an updated doctor’s letter and new biomaterial once a year for the so-called “follow-up documentation”. We will mail you the necessary tubes in advance.

Special Features of Registration in the Fanconi Anemia Registry

If you would like to register yourself or your child for the Fanconi Anemia Registry (FA Registry), there are a few additional things to consider. You can find all the information you need on the Fanconi Anemia Registry website. Clicking on this text paragraph will take you there directly.