COVID-19 PANDEMIC UPDATES
|
Learn more

Stem cell donor and patient FAQs

Awaiting a stem cell transplant is a challenging and stressful experience, both for the patient and their loved ones. There are counselling resources available to help. Here is a list of frequently asked questions that may assist you — donor and patient — through this process.

 

Join the stem cell registry

Take the registration questionnaire to find out if you are eligible.

Frequently asked questions

What are stem cells?

Stem cells, specifically blood stem cells, are found in bone marrow, peripheral (circulating) blood and umbilical cord blood. Blood stem cells are not embryonic stem cells. They are immature cells which can become:

Red blood cells — carry oxygen though out the body.

White blood cells — fight infection.

Platelets — help control bleeding.

Blood stem cells are not embryonic stem cells. They come from bone marrow, circulating (peripheral) blood or umbilical cord blood. When patients need a stem cell transplant, it means that their bone marrow (stem cell factory) has failed due to an illness. Patients who undergo chemotherapy or radiation treatment may also need a transplant of healthy stem cells to help heal and re-boost their immune system.

What is Bone Marrow?

Bone marrow is the soft tissue inside our bones that produces blood forming stem cells. When diseases affect the bone marrow, and they cannot produce healthy stem cells, a stem cell transplant may be a patient’s best treatment option.

How does a stem cell transplant work?

A stem cell transplant replaces the patient’s unhealthy stem cells with a matching donor’s healthy stem cells. There are three sources of stem cells used in transplant.

The type of stem cell donation is determined by the transplant physician and transplant team based on the needs of the patient. Several factors are taken into consideration by the transplant team to best determine the type of stem cell donation for the patient. These factors include:

 

  • Whether a matching donor is available within the patient’s family or an unrelated donor is available somewhere in the world.
  • The patient’s prognosis (status and likely course of their disease).
  • The height and weight of the patient and the donor.
  • The age of the donor and the patient.
  • The urgency of the transplant.
How are donors matched to patients?

Stem cell matches are determined according to DNA markers called Human Leukocyte Antigens (HLA) which are known to be important when matching a patient to a donor. These antigens are found on the surface of white blood cells and are inherited from our parents. The best potential HLA match is from a sibling. However, most patients have about a 25 per cent chance of a sibling match. The rest may rely on a volunteer unrelated donor from outside their family.

When you register to join Canadian Blood Services Stem Cell Registry, a sample of your DNA is obtained to identify your HLA, which are entered into our database. This database allows us to search for potential donors that match a patient requiring a stem cell transplant. The closer the match between patient and donor, the better the outcome for the patient following the transplant.

Some patients have many potential donors because they have inherited common antigens and their markers are inherited in a common combination of gene forms. These markers occur with varying frequency in different ethnic groups, for instance, those common in Caucasians may rarely be found in the Asian community and vice versa. While not always the case, patients are more likely to find a matching donor among those who share their ethnic ancestry which makes an ethnically diverse donor base extremely important.

Learn more about stem cell donor eligibility.

I need a stem cell transplant. Can my relatives be tested to see if one of them is a match for me?

Please note, it is not the responsibility of you or your family to find your donor. Your transplant team, working with Canadian Blood Services Stem Cell Registry is responsible for locating an unrelated donor if you have not been matched with a family member. Anyone who joins the Canadian Blood Services Stem Cell Registry is making a commitment to be available for any patient in need. Once part of the stem cell registry, your HLA typing will be included in searches for all patients, both in Canada and around the world.

How is a volunteer unrelated donor found?
  • The patient’s transplant team submits a search request to Canadian Blood Services Stem Cell Registry.
  • The stem cell registry sends a report to the transplant team listing all the potential unrelated donors.
  • The transplant team identifies which donors to contact and submit their request to the stem cell registry who will then contact the donors directly. For International donors, the request will be forwarded to the applicable international registry who will contact their donors directly.
  • Once donors are contacted, the applicable registry confirms their interest in proceeding to complete a health screening to determine their eligibility and arrange for additional blood testing.

This is the first step of the process before possibly being selected as the most suitable match for the patient.

Learn more about the stem cell donation process.

What is Canadian Blood Services Stem Cell Registry?

Canadian Blood Services Stem Cell Registry — formerly known as the OneMatch Stem Cell and Marrow Network — is dedicated to recruiting and finding healthy, committed volunteer donors for patients in need of stem cell transplants. We belong to an international network of registries comprising of over 80 participating countries, with over 36 million donors from around the world.

Canadian Blood Services Stem Cell Registry operates according to international standards established by the World Marrow Donor Association (WMDA) -- the international organization that promotes the ethical, technical, medical and financial aspects of stem cell transplantation. We coordinate searches in Canada, as well as other international registries, towards a single goal - helping patients get the stem cells they need.

How do registered donors donate stem cell?

There are two types of donation procedures:

      1. Peripheral blood stem cell donation (PBSC)

PBSC are collected from circulating (peripheral) blood. Since only a small number of (blood) stem cells is released into the blood stream, a cell growth stimulating drug is administered to donors prior to the donation to dramatically increase the volume of stem cells in the blood for collection and transplant.

PBSC donors receive an injection of a drug called granulocyte colony stimulating factor (G-CSF) every day for four days prior to the donation. These injections stimulate the production and release of stems cell from the bone marrow into the blood stream. Additional injection(s) may be required on the day of the donation. The stem cells are then collected using a procedure called apheresis.

Apheresis is a collection method where only the stem cells are separated and collected during donation. The remaining blood components are returned to the donor. This is a non-surgical procedure and takes approximately four-six hours. In some cases, a second donation is required the following day.

      2. Bone marrow

Bone marrow stem cell donation is a surgical procedure performed under anesthesia. The physician administering the donation uses a special hollow needle to withdraw liquid marrow from the back of the pelvic (hip) bones . The procedure usually lasts 45 to 90 minutes. The amount collected can range from 0.5 litres to 1.5 litres depending on the number of stem cells the patient needs. This is calculated based on the height and weight of the donor and patient.

More about stem cell donation.

I am a patient. How are donated stem cells delivered to me?

Once the donation is completed, a specially trained courier hand delivers the donated stem cells from the collection centre back to your transplant centre (hospital). Canadian Blood Services Stem Cell Registry ensures travel documents and plans are in place to safely travel within Canada and around the world. Umbilical cord blood units travel by medical couriers as the product must remain frozen.

What is the outlook for patients who receive stem cell transplants?

Transplant outcome depends on many factors including:

  • How well the donor and patient are matched
  • The type and stage of the disease
  • The health and age of the patient
  • The age of the donor and how many stem cells are transplanted

While there are no guarantees for the patient, a transplant may be the best hope of returning to good health.

Do donors always follow through when they get the call to donate?

The majority of people who register to donate stem cells have a strong commitment to help any patient in need. However, after months or years of being on the registry, when we reach out to potential donors who are a special match for a patient, many are either unreachable or are no longer available to donate. We recognize that a potential donor’s availability can change for many reasons, for example, issues with their health. As a result, there are instances when some people may decline to donate. Whenever possible, it is important for us to identify this before someone is a potential match.

That is why we are now reaching out more regularly, to provide information about the program and to ask all potential donors to re-commit to the stem cell registry. If a search for a patient identifies someone as a potential match, we want to be able to give both the donor, and the patient the positive news.

Are there stem cell matches for every patient?

Unfortunately, even with millions of potential donors listed on registries around the world, as well as many publicly banked cord blood units, it may not be possible to find a stem cell match for all patients. If a donor is not found, it may be that the patient has unusual genetic markers/antigens, or the combination of antigens is uncommon. In this case, the transplant team may consider other options for the patient.

I received a stem cell transplant. Will I ever get to meet my donor?

The privacy of both the stem cell donors and patients must be respected. For this reason, there are restrictions regarding the direct communication and exchange of identifying information between donors and patients for at least one year after the donation.

After the year has passed, if both the donor and patient consent in writing, direct communication may be permitted. You should be aware that some transplant centres and international registries require a longer waiting period, and some do not permit direct communication between donors and patients under any circumstances.

To determine if you would be able to make contact with your donor, please initiate a discussion with your transplant team.

How can my family and friends help?

The search for an unrelated donor will likely inspire your family and friends to consider registering to become stem cell donors themselves, if they are eligible. It is statistically unlikely that extended family and friends will be a match for a patient, but by registering to become a stem cell donor, they could help another patient who is relying on someone they don’t know to be the match for them. So, it is important for family and friends, who may wish to register as a stem cell donor, to understand that they are also registering for all patients in need.

Another important way to help patients is by donating blood. Many patients in need of a stem cell transplant are also in need of blood and blood products as part of their treatment. Anyone interested in donating blood can book their appointment today.

More about registration and eligibility.

Why do you have to be 35 years of age or younger to donate?

The national and international transplant community has defined the ‘optimal donors’ as young males between the ages of 17 and 35. Stem cells from younger donors can offer the possibility of better patient outcomes by reducing post-transplant complications. Younger donors will also remain on the stem cell registry longer, thereby leading to fewer registrants needing to be recruited.

Why are you focused on recruiting male stem cell donors?

Largescale studies have suggested that using male instead of female donors can reduce graft versus host disease (an immune response that occurs in a patient after transplant when the donor stem cells attack the patient’s own cells and tissues) after a stem cell transplant. Even as newer and more effective ways of preventing graft versus host disease continue to develop, the effect of donor sex on transplant outcomes is still unclear. Although transplant centres continue to select male donors, this may be in part because, on average, more stem cells can be collected from male donors.

We are committed to making the Canadian Blood Services Stem Cell Registry as effective as possible for both Canadian and international transplant centres and it is in this capacity that we continue to try and recruit as many males as possible. We continue to monitor new data on this topic and adapt to changing trends and preferences of our transplant partners.

What if I still have questions?

Should you or your immediate family have any questions or concerns about the search process for a volunteer unrelated donor, how to register as a potential donor and engage your community, or anything else related to an unrelated stem cell transplant, please call 1 888 2 DONATE (1-888-236-6283) or email at stemcellregistry@blood.ca.