Here you’ll find answers to frequently asked questions about stem cell donation.
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ABOUT BECOMING A DONOR
Who needs a Donor (Allogeneic) transplant?
In many cases, a blood stem cell donation is needed as a treatment for myeloma, lymphoma, or a form of leukaemia, such as acute lymphoblastic leukaemia, acute myeloid leukaemia, or chronic lymphocytic leukaemia. They are also given to patients who suffer from diseases of the hematopoietic cell system. These diseases can include various forms of leukaemia and lymph node cancers, thalassemia, severe aplastic anaemia, serious congenital immunodeficiency and other diverse diseases of the red blood cells.
Who can be a donor?
Any healthy adult between the ages of 18 and 50 can become a donor. If you are already registered with any registry, it is not necessary to sign up again. If you suffer or have suffered from a chronic illness or any other severe illness or regularly take medication, please discuss your case with SCRI.
The most important exclusion criteria are:
- Cardiovascular diseases (e.g. heart attack, coronary heart disease)
- Pulmonary diseases (e.g. severe bronchial asthma)
- Severe kidney diseases
- Severe neurological diseases
- Diseases of the hematopoietic system
- Metabolic diseases (e.g. diabetes)
- Autoimmune diseases (e.g. rheumatism, multiple sclerosis)
- Severe infectious diseases (e.g. HIV, hepatitis C, chronic hepatitis B)
- Weight under 50 kg
- Morbid obesity, i.e. a body mass index (BMI) of more than 40 (BMI = weight/height²)
- Identified as belonging to a risk group for severe infections transferred via blood
- Severe allergies
SCRI BMST is legally obligated to comply with the international medical exclusion guidelines for stem cell donors.
How will the security of my data be ensured?
All personal data collected by SCRI BMST is subject to special protection in accordance with the Information Technology Act 2000 (IT Act) and other applicable provisions for data protection, which we ensure by means of technical and organizational measures. Also, SCRI BMST and its cooperation partner, DKMS gemeinnützige GmbH, are obliged to follow the World Marrow Donors Association’s (www.wmda.info) data privacy standards.
Only unidentifiable donor data relevant for the donor search, such as donor identification number, gender, date of birth, tissue (HLA) typing results and the donor status (available or unavailable), will be transmitted in an encrypted form to stem cell donor registries and healthcare institutions in India and abroad. Names, addresses or similar identifying data will NOT be transmitted.
The donor can request in writing the access to his/her data, including the results of any tests overseen by SCRI BMST. The donor can also request correction or deletion of his/her data. We will only use donor data in accordance with the donor’s consent, or as strictly mandated by law or good clinical practice. We will never sell donor data.
What happens after registration?
After you register with SCRI, we will share your tissue (HLA) data in an unidentifiable manner with the international search platform of the Bone Marrow Donors Worldwide (www.bmdw.org). This means you will become available as a potential donor to patients in need of a transplant.
Based on our experience, no more than 5% of potential stem cell donors end up donating stem cells within the first ten years. For new donors, the probability is approximately 1% within the first year after typing.
CAN I REGISTER FOR A SPECIFIC PERSON?
No. When you register with SCRI, you are added to the national registry where any patient searching for a donor can potentially match with you. Registering is a serious commitment that requires you to be willing to donate to any patient in need. If you only want to see if you can donate to a particular person, you must be tested privately through the patient’s transplant doctor.
I am already registered. Can I still register with scri too?
If you are already registered with any other registry in the country where you are living, you should not re-register. We, and each of these organisations, list the relevant information of our donor’s with the Bone Marrow Donor Worldwide (BMDW), so re-registering would lead to duplication, confusion and a waste of resources.
I’M OVER 50 YEARS OF AGE, WHY CAN’T I REGISTER?
The age limit is not intended to discriminate. Medical guidelines have been established to protect the safety of the donor and provide the best possible treatment to the patient. With age comes a small increase in the risk of side effects from anesthesia. Additionally, research shows that cells from younger donors lead to a more successful outcome for the patients.
Does ethnicity affect finding a match?
Ethnic heritage is a very important factor. Donors are most likely to match a patient of their own ethnicity, because people from the same ethnic group are more likely to have the same tissue traits. With more than 17,000 known HLA characteristics that can occur in millions of combinations, finding a match is already extremely rare. Patients of more diverse ethnic backgrounds also tend to have more diverse HLA types, making it even more difficult to find a match.
WHY ARE THERE WEIGHT RESTRICTIONS FOR POTENTIAL DONORS?
There are medical guidelines for bone marrow donations that have been established by the National Marrow Donor Program (NMDP) to protect the safety of the donor and provide the best possible outcome for the patient. The height and weight guidelines for donors allow for a Body Mass Index (BMI) of up to approximately 40. Possible complications with donors that have a higher BMI include increased risk during anesthesia for bone marrow donation and compromised venous access for PBSC collection.
IS DONATING STEM CELLS THE SAME AS DONATING BLOOD?
No. When you register with SCRI, you are making yourself available as a potential stem cell donor for a patient in need of a transplant. If you match with a patient, you will be asked to donate blood stem cells or marrow in procedures that differ from donating blood. You can remain a regular blood donor after registering as a stem cell donor, however if you do match with a patient, we ask that you don’t give blood for a month prior to donation.
WHAT ARE THE CHANCES I’LL GET CALLED TO DONATE?
You could be called as a potential match within weeks of registering, or perhaps it will take years. There is a chance that you may never be called, but there is also the chance that, if you do get called, you are the ONLY one who can save that patient’s life.
AM I THE ONLY MATCH?
It is possible for a patient to find multiple potential matches. However, that information is known only to the patient’s doctor, not to us. The doctor will select the best donor based on how close the HLA match is, as well as the donor's age, sex, size, health history, availability and other factors. If you are contacted as a potential match but not selected for donation, we will inform you. You will remain on the registry to be available for other patients in need.
WHAT MAKES A GOOD MATCH?
Doctors generally look at 10 specific HLA markers to determine a match. Most require at least a 9 out of 10 match, but a 10 out of 10 is best. The closer the match, the better the chances that the patient’s immune system will recognize the donated cells as their own and allow them to grow and make new healthy blood cells. We generally don’t find out exact patient-donor HLA match ratios.
Can a potential donor withdraw his/her commitment to donate?
On being identified as a match for a patient, you may withdraw from making a donation, at short notice, for personal or other reasons. Please note that we respect your decision, regardless. However, if you withdraw your commitment shortly before the actual transplantation, the doctors would have already initiated the patient’s preparation phase for the stem cell transplantation and at this point in time, the patient cannot survive without the transfer of your stem cells.
CAN A REGISTERED POTENTIAL DONOR EXIT THE REGISTRY?
We urge you to consider the commitment you make to save a life, before you sign up with SCRI. If, however, for health or other personal reasons, you wish to exit the SCRI, you need to inform us in writing so that we can remove your details from the registry. Your decision will in no way affect the services you may receive from SCRI in the future.
Can a person donate stem cells multiple times?
There are donors who have already donated stem cells multiple times for one or more patients. Since stem cells regenerate again after collection (similar to a blood donation), it is possible to donate multiple times. In principle, however, we are conscious about keeping the burden low for you. It is necessary to reserve a donor who has already given stem cells to a patient for an additional donation, in case of a possible relapse of the same patient’s state of health.
Is an HIV test performed at the same time that a person is added to the SCRI database?
As part of your registration with SCRI, your tissue characteristic combinations will be examined. However, no tests for specific infections are carried out. Since specific requests for a stem cell donation are usually not made until years later, we do not examine you for specific infections such as HIV, hepatitis B and C, Cytomegalovirus (CMV) and other infections, until you are actually being considered as a donor.
WHY DO I NEED THE SCRI DONOR CARD?
When you register as a potential stem cell donor, you receive a SCRI donor card. This will contain your personal SCRI donor number. It makes our work easier if you keep the donor card close to hand and state your donor number when we contact you.
How does a stem cell donor search proceed?
First the clinic that is treating the patient checks whether siblings are suitable as donors. Currently only about 30% of patients find suitable donors in their family. If this is unsuccessful, the search extends to additional family members. Generally, a family tree with the corresponding tissue characteristics is created this way.
If no suitable donor is found within the family, the search for an unrelated donor begins.
I MOVED. HOW DO I UPDATE MY PERSONAL DETAILS?
You can easily change or update your personal details by sending an email to email@example.com or call us on +91 80 2521 2117 / 2115 / 2113.
CAN I REGISTER if i have ASTHMA?
Whether or not you can register as a potential blood stem cell donor if you have asthma depends on how severe it is and how it is controlled. You can register if it is controlled with inhalers or non-steroidal oral medication. However, if your asthma requires oral steroids or steroid sparing agents, then you are not able to register. You are also unable to register if your asthma has meant you have been admitted to hospital with the need for IV steroids or emergency care in the past two years. Additionally, if you have ever been admitted to intensive care as a result of an asthma attack, then you are not able to register.
I HAVE EPILEPSY, CAN I REGISTER?
If you have Epilepsy, whether or not you can register as a potential blood stem cell donor depends on the frequency of your seizures.
It is possible to register as long as you have been seizure-free for the past 12 months without needing medication. However, if you are currently requiring medication or have recently had a seizure, then you are unable to register. You are also not able to register if seizures are related to a problem with, or injury to, the brain.
CAN I REGISTER IF I HAVE DIABETES?
This depends on which type of Diabetes a person has.
If someone has type 1 Diabetes, then unfortunately they are unable to register as a potential blood stem cell donor. This is because tablets or insulin injections are needed and the donation process could put the donor at risk.
If a person has type 2 Diabetes, then they can possibly register. To be able to do so, their Diabetes has to be controlled by diet and there should be no other risk factors such as obesity, high blood pressure and cardiovascular disease.
You are also unable to register if you have Diabetes Insipidus. This is because the process of donation poses a risk to the person donating their blood stem cells.
What if I am/become pregnant?
You can still register with us as a potential stem cell donor during your pregnancy as long as you fulfil the other requirements for donor suitability. Please let us know whether you are pregnant and what your due date is. From this time and generally six months after the birth (nursing and recovery time), you will not be able to be a donor. After this period has ended, you will once again be available for inquiries unless we hear otherwise from you.
HOW DOES A STEM CELL DONATION PROCEED?
HEALTH CHECK AND CONFIRMATORY TYPING (CT)
Before the collection, you will receive a detailed health questionnaire so that possible current exclusion criteria for a donation can be detected early. This is followed by a Confirmatory typing (CT), in which your tissue characteristics are analyzed again using an additional blood sample. In addition to this, your blood is tested for specific infections, such as HIV or hepatitis viruses. Using these results, a decision is made as to whether you are a 100% match for your patient.
Once you are confirmed as a match, you will undergo a thorough examination by a doctor to ensure that you are in good general health. This comprehensive examination ensures that the stem cell collection will take place with the least risk possible, for you and for the patient.
Before the stem cell collection, you do not need to comply with any particular restrictions, however, you should avoid any and all risks that could lead to illnesses or serious injuries which would subsequently put the stem cell donation at risk.
WHAT IS THE DIFFERENCE BETWEEN “BONE MARROW” AND “BLOOD STEM CELLS?
When you register, you have the potential of donating either bone marrow or blood stem cells, depending on the needs of the patient. Bone marrow is the spongy tissue inside your bones that produces blood stem cells—the cells in your body that produce red and white blood cells, as well as platelets. These blood stem cells also exist in your bloodstream, where they are called peripheral blood stem cells (PBSC). There are different procedures for donating marrow and blood stem cells.
Peripheral stem cell donation
In approximately 80% of cases, the stem cells are collected from the bloodstream. In order to increase the number of stem cells in the bloodstream, the donor is administered a growth factor (a hormone-like substance) over a period of five days. This substance, which the body normally releases during an infection, ensures that an increased number of stem cells are being produced in the bone marrow and are flowing into the bloodstream, where the stem cells are ultimately collected. The donation lasts 4 - 8 hours over one to two consecutive days. No operation is necessary; you can usually leave the clinic on the same day. This procedure has been used in medicine since 1988. During the administration of the medication, you may experience flu-like symptoms. There is no evidence of long-term side effects, according to the current state of research. In order to continue to monitor this, we remain in regular contact with our donors.
Bone marrow donation
In this method, bone marrow from the iliac crest (not spinal marrow!) is collected from the donor using a puncture needle under general anesthesia. Two small incisions in the area of the rear pelvic bone are usually sufficient. The resulting wounds are so small that they only require a few stitches (and often require none at all) and heal quickly. The collection takes place with the donor laying on his/her stomach and lasts approximately 60 minutes. While making a bone marrow donation, the risk is primarily limited to complications from the anesthesia. Approximately one litre of bone marrow/blood mixture is collected from the iliac crest (hip bone). Within two weeks, the body completely regenerates the donated bone marrow. You may experience local wound pain similar to a bruise. In very rare cases, donors may experience pain that lasts longer. The hospital stay lasts a total of three days. In most cases, donors take sick leave for a few days as a safety precaution.
Does bone marrow have anything to do with spinal marrow?
Spinal marrow (part of the central nervous system) and bone marrow (the most important hematopoietic organ in humans) are often confused. The donor’s spinal marrow remains unaffected. If collection is required via a surgical procedure, the bone marrow and/or the stem cells are removed from the iliac crest. The collection is carried out under general anesthesia.
Will I permanently lose my stem cells after the donation?
Stem cells are generated daily in thousands in our bodies. After stem cell donation, the body regenerates the level of stem cells within two weeks. The process is comparable to a blood donation and does not lead to a permanent loss of stem cells.
DO G-CSF INJECTIONS HAVE ANY LONG-TERM SIDE EFFECTS?
G-CSF is a naturally occurring growth hormone that stimulates the production and mobilisation of stem cells in the blood. The donor may experience temporary flu-like symptoms (headache, body ache, fatigue, nausea) while he/she is on G-CSF. These symptoms disappear within a day or two following the donation and donors can take non-aspirin products (such as Paracetamol or Ibuprofen) for relief from the discomfort. These are no known long-term side effects of this procedure.
Can I choose the method of stem cell donation?
The method of collection is suggested by the treating transplant doctor and depends on the patient’s state of health. Although we try to accommodate your preferences, one method may be excluded or preferred due to medical reasons. In principle, you should be prepared for both methods.
MUST THE DONOR HAVE THE SAME BLOOD TYPE AS THE PATIENT?
For stem cell transplantation, the matching of blood types or groups is not at all important. The critical decision of selecting a donor is based on the most precise match possible of tissue characteristics (HLA characteristics) between the donor and patient. Finding an almost 100% match is very complicated and is therefore often compared to the proverbial search for a needle in a haystack. If a donation is made, the recipient (patient) also takes on the blood group of the donor, together with the stem cells.
CAN MY BLOOD STEM CELLS TRANSMIT DISEASES THAT THE PATIENT DID NOT HAVE BEFORE?
If you are a match for a patient you would have numerous medical assessments before the donation and will be screened thoroughly to ensure you are a completely suitable and safe donor for the patient.
WHAT COMPLICATIONS CAN ARISE FOR A PATIENT WHO HAS RECEIVED A BLOOD STEM CELL DONATION?
Complications during the preparatory phases generally occur in the form of the known side-effects of chemotherapy and radiation therapy, such as nausea and regurgitation. During the initial period after the donation, a higher risk of infection generally exists since the patient’s immune system is weakened after the preparatory phases and can only recover gradually. Unfortunately, setbacks can also occur because, in rare circumstances, not all cancer cells are destroyed. That means that a renewed outbreak of Leukaemia can occur again, even after the donation. The new stem cells can also prove to be incompatible with the patient’s own body tissues and this subsequently leads to a reverse rejection reaction. This complication (Graft-versus-host Disease) can occur in various levels of severity. However, it can often be treated successfully. If the donor’s stem cells do not grow or it leads to a relapse of the disease, the donor might be asked whether he/she is willing to provide another stem cell donation.
HOW HIGH ARE THE CHANCES OF A CURE DUE TO A STEM CELL DONATION?
For 40-80% of patients who have a donation, the treatment is successful. The survival time after a donation depends on many different factors including the age and health condition of the patient, the timing of the donation, the type of underlying disease and the emergence of potential complications.
WHY ISN’T STEM CELL COLLECTION POSSIBLE IN ALL MAJOR CLINICS?
Collecting blood stem cells is a highly skilled procedure and unfortunately not all clinics have the technological capabilities and expertise needed to do this.
HOW LONG DO I HAVE TO MAKE A DECISION?
When you register as a bone marrow donor, you make a serious commitment. You always have the right to change your mind. However, a late decision to NOT donate can be life-threatening to the patient, so we ask that you consider your decision seriously upon learning you are a potential match. Talk to family, talk to friends or talk to your SCRI coordinator, who can answer all your questions and even connect you with a past donor to give you first-hand insights into donation.
A FRIEND/RELATIVE NEEDS A BONE MARROW TRANSPLANT. HOW CAN I HELP?
Learning that a loved one may need a bone marrow transplant can be an overwhelming experience. Close friends and relatives of the patient want to help, but don’t always know what they can do. SCRI provides a positive way to get involved: organizing bone marrow donor registration drives to search for donors, rally community support and connect families that are spread across the country. We’ll support your efforts with social media campaigns to create a movement behind your cause. To learn more about the support we can provide you with, please contact us at firstname.lastname@example.org or call us at +91 80 2521 2115 / 2117.
HOW ARE MEDICAL COSTS COVERED?
There will be no cost to you. When a donor is matched with a patient, we will cover the costs (including any travel, meals, or lodging expenses that may be necessary). SCRI will also cover the costs for a companion to travel with you to the hospital. It is never necessary to use a donor’s own health insurance. Whilst it is extremely rare to require follow-up care, if it is ever needed, the donor’s costs will also be covered by SCRI. Other than that, we are not legally allowed to make any payments or rewards for the provision of tissues, including bone marrow or blood stem cells for transplantation.
Will I be granted sick leave for my donation and how will my employer react?
In the case of a stem cell donation, your employer will be contacted by SCRI. You will receive a letter to present to your employer in which we ask for you to be released from your duties for the period of the preliminary examination and the collection. Our experience has shown that employers react very positively when an employee is asked to donate stem cells.
For peripheral stem cell collection, you are unable to work on the one or two collection days only. If, despite expectations, you do require sick leave, a certificate can be issued by our doctors. For bone marrow collection from the iliac crest, you are generally in the hospital for three days (including the admission and discharge day), even though the procedure takes about an hour. In most cases, donors subsequently take sick leave for a few days as a safety precaution.
HOW IS MY PATIENT DOING? CAN I MEET HIM OR HER?
We receive information about the patient’s state of health from the transplantation clinic no earlier than three months after the stem cell donation. If the donor would like feedback, he or she will generally receive a message from SCRI. If you have additional questions, the medical department is available at the following number and would be happy to help: +91 (0) 80 2521 2113.
CONTACT WITH PATIENTS
International guidelines stipulate that donors and patients may only meet each other in person two years after the donation, which is additionally dependent on the regulations in the patient’s country of residence. In the meantime, donors can contact patients anonymously, sending letters or gifts via SCRI. Due to privacy reasons, SCRI has no direct contact with patients and often has only a minimal influence on the forwarding of mail to patients. Here, we depend on the support of the hospital treating the patient. Since patients often receive further treatment from another clinic or hospital after the transplantation, delays may occur. After the end of the two-year period, donors and patients may write to each other directly or meet each other in person – again mediated by SCRI, provided both parties agree. Experience over the years has shown that many donors and patients want to get to know each other. Time and time again, meetings between donors and patients are very moving moments. It is not uncommon for lasting friendships to develop.
WORKING/VOLUNTEERING FOR SCRI
HOW CAN I VOLUNTEER AT SCRI
If you are interested in volunteering at our office in Bangalore, and can spare one or two days a week, we’d love to hear from you!
Just email us at email@example.com for more information.