When you click ‘Enrol MSD Patient’ and submit your basic information we will send out an enrolment pack by post, it may take up to 10 days for you to receive this depending on your geographical location. We will endevour to have these sent immediately however please understand that we are a voluntary non-profit organisation.

We will need you to endeavour to fill out the forms to the very best of your ability and sign the consent forms. If you are having difficulty and need assistance you can email and maybe we can arrange a call to assist. Your doctor may also be able to assist if you ask them on the understanding that it is you that is submitting the information on a voluntary basis (this removes any legal concerns a doctor may have). This is a patient led patient registry which will expedite the process with your commitment, you the parents/guardians can probably answer most questions easier and quicker than your doctor. We are happy to receive contact from doctors regarding the registry if they feel they need to know more.

The registry will consist of a series of questions that will give a clear picture of the current clinical condition and past history of your child. You may also need a copy of the lab report you received with the diagnosis. It may be referred to as a molecular analysis report. This will give the gene mutations that your child carries. The gene mutation that your child carries is an essential element that is required for the registry.

We will need you to complete all sections of the forms and supply copies of as many of the most recent test results as possible. You are entitled to a copy of any test results/reports, If you do not possess these or have difficulty locating them then please request these immediately from your appropriate doctor to minimise delays.

Please post your registry forms and documents to:

MSD Patient Registry

Attention Dr. Lars Schlotawa

Klinik für Kinder- und Jugendmedizin,

Universitätsmedizin Göttingen,

Robert-Koch-Str. 40,

37075 Göttingen,



You may contact MSD Patient Registry by emailing