Registering

What is involved in signing up for The Anthony Nolan bone marrow register?

Basically, when signing up for The Anthony Nolan bone marrow register, you are provided with an application pack, which includes an information booklet about what's involved in registering. It also includes an application form to complete. You'll then have a one on one interview, or a counselling session, with a member of the Anthony Nolan team. We can go through any queries or concerns you might have about the whole process, and then you give a small blood sample.

What information will I need to provide?

The form will take about 15 minutes to complete and you need to give your current contact details, medical and lifestyle information.

How much blood do they take?

It's just a small 4 ml sample, so it's a teaspoon full of blood. That's all that's required to join the register.

What are people committing to by signing up?

In signing up, they're committing to being able to provide their life-saving cells should they become a match for a patient. So they need to be committed to the whole process. All of a sudden, people's circumstances may change, because they're on the list until age 60, which is quite a long time, and we appreciate that. But initially when they are registered, they do need to be committed to the whole process.

What are the common misconceptions about joining the bone marrow register?

There's many misconceptions surrounding the donation process. A lot of people think when they're actually signing up to become a donor that they need to donate their bone marrow. That isn't the case at all, it's just a simple blood test. All we can suggest is that people log on to the web site, speak to somebody who does have background knowledge of what actually is involved, and then they can make an informed decision, rather than going by a lot of these misconceptions that people have. There's also a misconception that we drill into the spine, while in fact we just extract the bone marrow from the pelvis using a sterile hollow needle. There's no scarring at all. There will be some discomfort in the lower back and if you follow the precautions, we don't want anybody doing any heavy lifting or doing anything strenuous after the procedure. We recommend five to seven days after the procedure to relax. If you follow those precautions, then you're back to your normal self. After the bone marrow harvest, the stem cells do regenerate within 21 days. We're not taking something away from you that you're not going to get back.

Why do you need more people from different ethnic backgrounds to join the register?

When matching patients, tissue type is genetically inherited to characteristics, so you're more likely to match someone from the same background as yourself. Also, there's a severe shortage of people from ethnic minority groups on the register, so we need to increase the numbers so that we're able to give all patients that chance of life.

Why do you need more men to sign up?

We need more male donors to join the register because they can provide a higher volume of cells. If there is a choice of donor, a man would be preferred because of the success of the transplant is higher. At the moment, less than 10% of men on our register are between the ages of 18 to 25 so we really need to address that by trying to recruit more younger men to the register. People use the excuse that they are frightened of needles and things like that, but these patients don't have a choice. And you could provide the only life line they've got, so we urge you to come forward.

What happens to each blood sample?

The blood samples are then sent to the Anthony Nolan Labs where we carry out detailed tissue typing. The testing of these blood samples can take six to eight weeks. Once that's been done, we then send the donor a donor card to let them know that they are active on the register. And what that means is anytime there is a search for a patient, their details will then be included in that search.

How much does it cost to register someone as a potential donor?

It costs the Antony Nolan Trust seventy pounds to register each potential donor. Obviously it's free for people to join the register but if they can assist us by joining any fund raising activities, then that is great as well as it all goes toward the cost.

How important are charitable donations?

The majority of our funds come through charitable donations. If we can encourage people to participate in fund raising events, get your companies to sponsor us as charity of the year, all of this goes towards our lifesaving work. Helping us raise funds and also helping us to get more donors on the register .

What happens if I'm a match for someone?

At each stage, if somebody comes up as a match for a donor, a member of staff will contact them just to advise them on the telephone that they've come up as a match, and to let them know that a testing kit will be sent through the post. They will then need to take that kit to their GP to have further blood samples taken so that we can carry out virology testing and possibly more detailed testing on the blood sample. Once that's been done, then they would be called to have a full medical. And then, depending on the condition of the patient, depending on when the donation was scheduled, but it's generally around six to eight weeks after the initial call. You have the choice of the two methods of donation, which is the bone marrow harvest, and the peripheral blood stem cell collection. Now, the bone marrow harvest involves two night's stay in a London hospital, and the stem cells are extracted from the pelvis using a sterile hollow needle. The procedure is carried out under a general anesthetic, and it will take about one to two hours for us to remove the cells. The cells regenerate within 21 days. After the procedure, we recommend to take up to five to seven days just to relax after that. We don't want you doing anything strenuous or participating in any heavy sport. The other method of donation is the peripheral blood stem cell collections. That involves a five day course of injections of GCFS, which is a growth factor that helps stimulate the production of your cells, so that they spill out into your blood flow. We are then able to extract the blood cells through a vein in one arm and it goes through a machine which separates the cells from the blood, and the remaining blood is pumped back in through the other arm. And that procedure takes four to five hours.

How long will a person remain on the bone marrow register?

Once you've registered, you remain on there until your 60th birthday. So it is a long term commitment for people, and they do need to be aware of that.

What are the chances of being a match for someone?

The majority of our donors don't actually come up as a match for a patient. But we can't find that information out unless they take the vital steps in registering. Obviously the more people we have on the register, the more chances we have of finding matches for patients.

If I'm a match will I be in contact with the recipient?

The majority of our donors and patients never actually meet, and it's currently Anthony Nolan policy to wait until a two year time period has lapsed before they get the opportunity to meet each other. That needs to be instigated by the recipient.

Can anything make me inelligible?

To join the register, you need to be between the ages of 18 and 40, and in good health. You need to weigh over eight stone and not be severely overweight. There's a number of medical conditions that would exclude you from joining the register. So if you have any mandibular disorders, severe asthma, or quite severe back conditions, then it's worth contacting Anthony Nolan just to ask the question if you can join.

Have you seen the results of a successful transplant?

I've met many patients who have received the life-saving cells from one of our amazing donors. We've given the chance of life to over 4000 patients to date, and that's continuing to rise. But obviously these people wouldn't be leading healthy, normal lives if people hadn't taken the first step to come along and register as a donor.

What have people who have become donors said to you about the experience?

Many people who have actually donated found it very humbling and find it a life enhancing experience to know that they could be the only chance of life for a patient. Without people looking forward to register, these patients may not survive, so it is really important to increase the number of donors on the register so that we can help those patients looking for a match.

What would you say to anyone who is considering joining the register?

If you are between the ages of 18 and 40 and in good health, I urge you to come forward. We particularly need more young men to register. There's currently 7,000 patients looking for a suitable match. They've searched the world wide register of over 11 million donors and haven't found a match. Time is of the essence, so please register now.