Updating your donor profile

Over the last few years, laboratory methods and evaluation processes have improved considerably.

Why update?

It is important to ensure that our donors typing profiles are always in line with the latest scientific standards.

If you have been registered with DKMS for a lengthy period of time, you may be invited to provide us with a new sample to be typed again. We can't invite everyone to provide a new sample to be tested at the same time, so we are writing to our donors in stages.

For all new donors, our DKMS Life Science Lab currently types 24 different HLA markers in high resolution.

If you have been registered with us for a long time, you may have signed up at a time when:

• the importance of some HLA markers had not been fully recognised, meaning some information may be missing from your donor profile, or
• typing methods may not have been as sophisticated; we need to improve the quality of your typing profile

An updated profile makes selecting you as a match for a blood cancer patient easier and saves valuable time before a stem cell transplant. This could save a life.

Next steps

If you are asked to update your donor profile, you will be sent a health questionnaire and a swab kit.

The swab kit contains:

• a swab to re-swab the inside of your cheeks
• exact instructions on how to use the swabs.

Return the swab kit to us using the provided envelope. The health questionnaire will be sent to you online to complete.

By updating your profile, you improve the chances of patients finding the best possible match.

Your typing profile

Your HLA markers or CMV status could be of interest for further typing.

HLA markers

Human leucocyte antigen (HLA) markers are structures on cell surfaces; they vary from person to person. They are in effect the “signature” of your cells and help your immune system to differentiate between your body’s own structures and foreign ones.

HLA characteristics are crucial in determining the most suitable donor for a specific patient. The closer the HLA match between the recipient and the donor, the less likely the recipient’s immune system is to reject them, giving the transplant a greater chance to succeed.

CMV testing

Globally, between 30% and 90% of the population is cytomegalovirus (CMV) positive, meaning they have been infected at least once in their lives and, therefore, carry the virus.

In healthy people, a cytomegalovirus (CMV) infection is usually symptom-free. For patients in need of a blood stem cell transplant, who have weakened immune systems, a CMV infection can cause life-threatening complications.

A patient’s chances of survival are much higher if their CMV status is the same as that of the donor, so a match between the two can be crucial to the success of the transplant.

We are in the process of updating the profiles of donors whose CMV status is not in our system. All new donors who register with DKMS are tested for CMV as part of the initial registration process. This was made possible due to a new and innovative approach developed by our DKMS Life Science Lab. Donors who have been registered with us for a longer period of time may not have been tested for CMV.

Therefore, we are looking to update the profiles of donors:

• who registered before the standard typing of CMV
• where the lab originally failed to determine their CMV status.

CMV and pregnancy

If you are registered to donate blood stem cells and CMV status was tested while you were pregnant, you will find the result in your maternity pass.

Send a copy of the page showing the result to info@dkms.org.uk or to the contact named at the top of the letter you received enquiring about your CMV status. We will then let you know if a further CMV test is needed.