The Anthony Nolan Trust www.anthonynolan.org.uk Head Office Tel 020 7 284 1234 The Anthony Nolan Trust General information on Donor Recruitment THE ANTHONY NOLAN TRUST— Background The Anthony Nolan Trust was founded 32 years ago but has since grown to manage the world’s first and one of the largest fully independent registers of potential blood stem cell donors. The Trust was founded by Shirley Nolan in an attempt to save the life of her son Anthony, who was born suffering from an immune deficiency disease. Sadly he died five years later, aged seven, without a match being a found. There are now well over quarter of a million volunteer donors on the register and The Trust receives over 7,000 patient search requests each year from transplant centres worldwide. Being a charity without any government funding, The Trust relies on the public not only for financial support but also on support in promoting the need for more donors. Every year thousands of people with fatal bone marrow diseases, (such as leukaemia, aplastic anaemia), reach a stage when their only hope of survival is a blood stem cell transplant from a donor who shares the same ‘tissue type’. Although family members (mainly siblings) may offer the best match, unfortunately 70% of patients do not have a suitable sibling match and are, therefore, reliant on an unrelated donor to offer them the chance of life. Genetic makeup is incredibly varied and we match on inherited characteristics - ‘tissue types’, which is different to blood grouping. The likelihood of finding a matching donor is considerably greater if the donor is from a similar ethnic background as the patient. Due to shortages of donors from various ethnic backgrounds it can be much more problematic locating matches for some patients. On referral to The Anthony Nolan donor register, the patient’s tissue type is entered onto the computer and checked against all donors listed. The Trust also collaborates closely with with all international donor registers and co-ordinates all international searches for patients being treated in the UK. Despite access to over 9 million unrelated donors world-wide, some searches are still ‘unsuccessful’. However, as the size of the register grows so does the chance of finding an exact tissue type match for more patients, therefore, it is vital that we do all we can to increase the size of the register to help ALL patients in need. Donors cannot be tested JUST for one patient - they must be willing to help ANY patient that they may match whilst on the ANTHONY NOLAN register. This applies even if they join through a patient linked local donor appeal/campaign, we do NOT hold clinics to find matches for specific patients. KEY DONOR TARGET GROUPS: The Trust urgently needs more donors in general, however, we are particularly in need of donors from the following groups: young donors, male donors and more donors from all ethnic minority groups. Sadly we have thousands of patients awaiting unrelated stem cell transplants and all of these people are relying on a stranger to help save their lives. The Trust’s aim is to find matches for all patients referred to us. 1 The Anthony Nolan Trust www.anthonynolan.org.uk Head Office Tel 020 7 284 1234 IF A DONOR MATCHES, HOW ARE STEM CELLS DONATED? If a donor matches after recruitment, initially further blood samples are required and can be taken locally – ANTHONY NOLAN will send a sample kit to the donor’s home address via post. If, after these tests, they match and are chosen to donate then we arrange for them to have a medical in London and the donation is scheduled. All stem cell donations take place in London; The Trust covers travel and all loss of earnings. 1. BONE MARROW DONATION Stem cells from the bone marrow are taken from the pelvic bones under general anaesthetic by sterile needle and syringe in a process known as a bone marrow harvest. Usually the donor is fit to return home from hospital 24 hours after donating. The short-term effects may include some localised discomfort in the lower back, bruising and tiredness should be expected but these after-effects normally diminish within a week. It is advisable for a donor to take a week off work or other normal duties. 2. PERIPHERAL BLOOD STEM CELL (PBSC) DONATION To enable stem cells to be collected from the peripheral (circulating) blood the donor receives a 5-day series of injections (given locally by a specialist nurse) of a growth factor, (G-CSF). G-CSF occurs naturally and controls bone marrow reproduction, the injections increase the amount of stem cells in the marrow and these naturally spill out into the blood stream. These stem cells are collected from the donor as an out-patient on a blood cell separator machine in a process known as ‘apheresis’, which can take between 4-5 hours. Collections on one or two days may be necessary, but no overnight hospitalisation is required, and no general anaesthetic. The effects of the G-CSF before the stem cell donation may include bone pain and “flu-like” symptoms which resolve over one to two days after the last dose of the drug so that no extended recuperation should be necessary. *The donor has the choice of which donation method they would prefer but must be willing to donate marrow in the very rare case of insufficient cells being collected through the PBSC donation Criteria for donors joining The Anthony Nolan Trust: Must be aged between 18-40 yrs Should weigh at least 8 stone and not be obese (chart available) Should be in good general health. Must be willing to donate stem cells to ANY patient that they may ever match, all donations are anonymous. We do not hold clinics to find matches for specific patients. Must be committed to staying on the register and should make an informed decision when joining the register. Should discuss with family prior to joining. CONTACT DETAILS FOR NEW DONORS: www.anthonynolan.org.uk newdonor@anthonynolan.org.uk 24hr Donor Hotline: 0901 88 22 234 WHAT HAPPENS AT DONOR CLINICS? Potential donors should read the ANTHONY NOLAN donor literature provided at all clinics and fully consider the implications of joining the register BEFORE they proceed. If they are happy to proceed they need to complete a medical form with their contact details, GP address and medical history. 2 The Anthony Nolan Trust www.anthonynolan.org.uk Head Office Tel 020 7 284 1234 This form is discussed in private with the donor by trained Anthony Nolan staff /affiliated trained volunteers — we also discuss the procedure involved in being a donor, so we can be sure that the donor is making an informed decision at recruitment stage. If the donor meets the medical and ethical criteria then a 4 ml sample of blood is drawn from the donor. Donors with poor venous access or those prone to fainting would not be suitable. All samples are returned to ANTHONY NOLAN’s Laboratories in London and are tested. The donors are added on the register and receive a donor registration card from ANTHONY NOLAN. In line with ANTHONY NOLAN policy all donor guidelines both medical and ethical should be adhered to at all times. The literature used at clinics should be ANTHONY NOLAN material and donors must complete appropriate ANTHONY NOLAN medical forms. All information provided by Anthony Nolan is protected by copyright and should only be reproduced with Anthony Nolan’s full permission and knowledge. 3