Gift of Life Marrow Registry

Last updated
Gift of Life Marrow Registry
Company type Non-profit
Industry Health care
Founded Boca Raton, Florida, USA (1991)
Headquarters Boca Raton, USA
Key people
 Jay Feinberg, Founder & CEO
Stephen Siegel, Chairman
William Begal, Chairman Emeritus
Website www.giftoflife.org

The Gift of Life Marrow Registry is a non-profit organization founded in 1991 and headquartered in Boca Raton, Florida that operates a public blood stem cell and bone marrow registry while facilitating transplants for children and adults battling life-threatening illnesses, including leukemia, lymphoma, other cancers and genetic diseases. [1]

Contents

The registry contains over 470,000 potential donors, and has found more than 31,000 donor matches and facilitated over 5,000 transplants since its inception. [2]

History

Gift of Life was founded following a successful bone marrow registration campaign to save the life of Jay Feinberg, a 22-year-old analyst with the Federal Reserve. [3] [4]

Feinberg was diagnosed with leukemia in 1991. Since tissue type is inherited, like eye or hair color, a patient's best chance of finding a genetic match lies with those of similar ethnic background. For Feinberg, those were donors of Eastern European Jewish descent. After four years of searching for, a match was found with a 16 year-old girl from Illinois, saving Feinberg's life. [5]

At that time, the worldwide registry was not representative of all ethnic groups. Feinberg felt an urgent need to add diversity to the registry, creating the Gift of Life Marrow Registry. [6]

Background

Only 30 percent of patients with diseases treatable with a blood stem cell/bone marrow transplant can find a suitable donor among their family members. The remaining 70 percent must rely on the generosity of an unrelated donor to save their lives. There are more than 90 stem cell and marrow donor registries in 56 countries. [7]

Gift of Life was the first registry in the world to human leukocyte antigen tissue type stem cell and marrow donors on a mass scale at donor drives using buccal swabs.

Collection

Peripheral Blood Stem Cells (PBSC): [8] It is possible to collect stem cells from the peripheral blood rather than the bone marrow. In order to collect a sufficient quantity of stem cells, injections of a medication called filgrastim must be administered. This mobilizes stem cells to travel from the bone marrow into the circulating blood. The stem cells are collected through a procedure called apheresis, the same process used to collect several other types of blood components. A cell separating machine filters out the stem cells, which can then be infused into the recipient. Today, PBSC is requested approximately 90 percent of the time.

Bone Marrow: [9] Marrow is found in the hollow cavities of the body's large bones. Donation involves withdrawing 2-3 percent of the donor's total marrow from the iliac crest of the hip, posterior aspect of the donor's pelvic bone. There is no cutting or stitching. The procedure involves a needle aspiration, performed using an anesthetic. Typically, the donor enters a medical center’s outpatient facility in the morning and goes home in the afternoon. Today, bone marrow is requested approximately 10 percent of the time.

There are clinical reasons why one cellular source may be more beneficial for the patient over the other. The transplant physician requests one source based on the patient's circumstances. If a donor declines to donate via one method, the transplant center may or may not be able to accept the other, based on the clinical needs of the patient.

Gift of Life – NMDP Collection Center

In April 2019, Gift of Life opened the Dr. Miriam and Sheldon G. Adelson Gift of Life - NMDP Collection Center in collaboration with NMDP at its Florida headquarters. [10] The Collection Center primarily collects blood stem cells from donors for transplant into a patient. The stem cells are taken by a courier to the patient’s transplant center.[ citation needed ]

Center for Cell and Gene Therapy

Gift of Life opened a Center for Cell and Gene Therapy at its Boca Raton location in November 2020. [11] The facility houses a Cellular Therapy Laboratory and BioBank. High complexity testing (hematology and flow cytometry), processing (Sepax 2) and cryopreservation are performed at this location. [12]

Other United States Registries

The National Marrow Donor Program (NMDP) is a nonprofit organization founded in 1986 and based in Minneapolis, [13] that operates a registry of volunteer donors and cord blood units. In May 2004, the Gift of Life Marrow Registry and NMDP formed an associate donor registry relationship together.[ citation needed ]

DKMS, a German bone marrow registry, also operates a large U.S. bone marrow registry. [14]

Related Research Articles

<span class="mw-page-title-main">Leukemia</span> Blood cancers forming in the bone marrow

Leukemia is a group of blood cancers that usually begin in the bone marrow and result in high numbers of abnormal blood cells. These blood cells are not fully developed and are called blasts or leukemia cells. Symptoms may include bleeding and bruising, bone pain, fatigue, fever, and an increased risk of infections. These symptoms occur due to a lack of normal blood cells. Diagnosis is typically made by blood tests or bone marrow biopsy.

Aplastic anemia (AA) is a severe hematologic condition in which the body fails to make blood cells in sufficient numbers. Aplastic anemia is associated with cancer and various cancer syndromes. Blood cells are produced in the bone marrow by stem cells that reside there. Aplastic anemia causes a deficiency of all blood cell types: red blood cells, white blood cells, and platelets.

<span class="mw-page-title-main">Bone marrow</span> Semi-solid tissue in the spongy portions of bones

Bone marrow is a semi-solid tissue found within the spongy portions of bones. In birds and mammals, bone marrow is the primary site of new blood cell production. It is composed of hematopoietic cells, marrow adipose tissue, and supportive stromal cells. In adult humans, bone marrow is primarily located in the ribs, vertebrae, sternum, and bones of the pelvis. Bone marrow comprises approximately 5% of total body mass in healthy adult humans, such that a man weighing 73 kg (161 lbs) will have around 3.7 kg (8 lbs) of bone marrow.

<span class="mw-page-title-main">Hematopoietic stem cell transplantation</span> Medical procedure to replace blood or immune stem cells

Hematopoietic stem-cell transplantation (HSCT) is the transplantation of multipotent hematopoietic stem cells, usually derived from bone marrow, peripheral blood, or umbilical cord blood, in order to replicate inside a patient and produce additional normal blood cells. HSCT may be autologous, syngeneic, or allogeneic.

A cord blood bank is a facility which stores umbilical cord blood for future use. Both private and public cord blood banks have developed in response to the potential for cord blood in treating diseases of the blood and immune systems. Public cord blood banks accept donations to be used for anyone in need, and as such function like public blood banks. Traditionally, public cord blood banking has been more widely accepted by the medical community. Private cord blood banks store cord blood solely for potential use by the donor or donor's family. Private banks typically charge around $2,000 for the collection and around $200 a year for storage.

<span class="mw-page-title-main">Anthony Nolan</span>

Anthony Nolan is a UK charity that works in the areas of leukaemia and hematopoietic stem cell transplantation. It manages and recruits donors to the Anthony Nolan Register, which is part of an aligned registry that also includes the Welsh Bone Marrow Donor Registry, NHS Blood and Transplant's British Bone Marrow Registry and Deutsche KnochenMarkSpenderdatei (DKMS) UK. This aligned register is known as the Anthony Nolan & NHS Stem Cell Registry. It also carries out research to help make bone marrow transplants more effective.

<span class="mw-page-title-main">Cell therapy</span> Therapy in which cellular material is injected into a patient

Cell therapy is a therapy in which viable cells are injected, grafted or implanted into a patient in order to effectuate a medicinal effect, for example, by transplanting T-cells capable of fighting cancer cells via cell-mediated immunity in the course of immunotherapy, or grafting stem cells to regenerate diseased tissues.

<span class="mw-page-title-main">Jay Feinberg</span> American not-for-profit executive

Jay Feinberg is a long-term leukemia survivor, community organizer and founder and current CEO of the Gift of Life Marrow Registry.

The National Marrow Donor Program (NMDP) is a nonprofit organization founded in 1987 and based in Minneapolis, Minnesota, that operates the Be The Match Registry of volunteer hematopoietic cell donors and umbilical cord blood units in the United States.

<span class="mw-page-title-main">World Marrow Donor Association</span>

World Marrow Donor Association (WMDA) is an organization based in Leiden, Netherlands, that coordinates the collection of the HLA phenotypes and other relevant data of volunteer hematopoietic cell donors and cord blood units across the globe.

Juvenile myelomonocytic leukemia (JMML) is a rare form of chronic leukemia that affects children, commonly those aged four and younger. The name JMML now encompasses all diagnoses formerly referred to as juvenile chronic myeloid leukemia (JCML), chronic myelomonocytic leukemia of infancy, and infantile monosomy 7 syndrome. The average age of patients at diagnosis is two (2) years old. The World Health Organization has included JMML as a subcategory of myelodysplastic and myeloproliferative disorders.

Donor lymphocyte infusion (DLI) or buffy coat infusion is a form of adoptive immunotherapy used after hematopoietic stem cell transplantation.

<span class="mw-page-title-main">Peripheral stem cell transplantation</span> Method of replacing blood-forming stem cells

Peripheral blood stem cell transplantation (PBSCT), also called "Peripheral stem cell support", is a method of replacing blood-forming stem cells. Stem cells can be destroyed through cancer treatments such as chemotherapy or radiation, as well as any blood-related diseases, such as leukemia, lymphoma, neuroblastoma and multiple myeloma. PBSCT is now a much more common procedure than its bone marrow harvest equivalent due to the ease and less invasive nature of the procedure. Studies suggest that PBSCT has a better outcome in terms of the number of hematopoietic stem cell yield.

<span class="mw-page-title-main">Childhood leukemia</span> Medical condition

Childhood leukemia is leukemia that occurs in a child and is a type of childhood cancer. Childhood leukemia is the most common childhood cancer, accounting for 29% of cancers in children aged 0–14 in 2018. There are multiple forms of leukemia that occur in children, the most common being acute lymphoblastic leukemia (ALL) followed by acute myeloid leukemia (AML). Survival rates vary depending on the type of leukemia, but may be as high as 90% in ALL.

Microtransplantation (MST) is an advanced technology to treat malignant hematological diseases and tumors by infusing patients with granulocyte colony-stimulating factor (G-CSF) mobilized human leukocyte antigen (HLA)-mismatched allogeneic peripheral blood stem cells following a reduced-intensity chemotherapy or targeted therapy. The term "microtransplantation" comes from its mechanism of reaching donor cell microchimerism.

Deutsche Knochenmarkspenderdatei, abbreviated as DKMS, is an international nonprofit bone marrow donor center based in Tübingen, Germany, with entities in Chile, India, Poland, South Africa, the United Kingdom and the United States. DKMS works in the areas of blood cancer and hematopoietic stem cell transplantation and raises awareness of the need for donors for hematopoietic stem cell transplantation which people with blood cancers need for treatment as well as helping people sign up to their national bone marrow registries. Over the years, DKMS has expanded beyond Germany.

Amal Bishara is an Israeli Arab doctor, and the director of Bone Marrow Registry Outreach, Hadassah Medical Center, which is associated with the Hebrew University of Jerusalem in Israel. There she runs the only bone marrow transplant registry in the world for unrelated Arab donors. Dr. Amal has published and presented internationally on her research into immunogenetics. She serves on the Accreditation Committee of the European Federation for Immunogenetics.

<span class="mw-page-title-main">DATRI</span> Nonprofit organization for blood stem cell donation in India

DATRI is a not-for-profit organization registered in 2009 as a Section 8 company under Government of India. DATRI is one of the largest unrelated blood stem cell donors registry in India, that helps patients with blood cancer and other fatal blood disorders to find a HLA matched Blood Stem Cell donor. Blood stem cell transplant is a chance of cure for patients with blood cancer and other severe blood disorders. As of January 2023, DATRI has more than 5 lakhs voluntary donors registered and it has facilitated 1074 plus transplants worldwide. DATRI operates across India.

<span class="mw-page-title-main">Shimon Slavin</span> Israeli professor of medicine

Shimon Slavin is an Israeli professor of medicine. Slavin pioneered the use of immunotherapy mediated by allogeneic donor lymphocytes and innovative methods for stem cell transplantation for the cure of hematological malignancies and solid tumors, and using hematopoietic stem cells for induction of transplantation tolerance to bone marrow and donor allografts.

African Caribbean Leukaemia Trust (ACLT) is an independent UK charity for people with leukaemia and other life-threatening disorders. The ACLT aims to raise awareness on stem cell, blood and organ donation in the UK, with a particular focus on black and mixed race communities.

References

  1. ↑ "Financials". www.giftoflife.org. Retrieved 2019-11-20.
  2. ↑ "Home page - Gift of Life Marrow Registry". www.giftoflife.org. Retrieved 28 March 2024.
  3. ↑ "Cancer battle spurs entrepreneur to start donor registry". Reuters. 2011-07-13. Retrieved 2019-11-20.
  4. ↑ Stone, Judy. "What You Need To Know On World Bone Marrow Day". Forbes. Retrieved 2019-11-20.
  5. ↑ "Cancer battle spurs entrepreneur to start donor registry". Reuters. 2011-07-13. Retrieved 2021-12-18.
  6. ↑ Goldman, Ari L. (1991-12-16). "Day of Hope for Those Dying of Leukemia". The New York Times. ISSN   0362-4331 . Retrieved 2023-02-24.
  7. ↑ "WMDA Organisation data (Public Access)". share.wmda.info. World Marrow Donor Association (WMDA). Retrieved 2024-03-29.
  8. ↑ "Donation Frequently Asked Questions". bloodcell.transplant.hrsa.gov. Retrieved 2016-06-26.
  9. ↑ "Donation Frequently Asked Questions". bloodcell.transplant.hrsa.gov. Retrieved 2016-06-26.
  10. ↑ "StackPath". www.hpnonline.com. 22 April 2019. Retrieved July 17, 2020.
  11. ↑ "Gift of life marrow registry announces new center for cell and gene therapy – the Boca Raton Tribune – Stem Cell Clinic". www.stemcellclinic.net. 22 November 2020. Retrieved November 26, 2020.
  12. ↑ "Cell Therapy".
  13. ↑ Confer, D.; Robinett, P. (August 2008). "The US National Marrow Donor Program role in unrelated donor hematopoietic cell transplantation". Bone Marrow Transplantation. 42 (1): S3–S5. doi: 10.1038/bmt.2008.102 . ISSN   1476-5365. PMID   18724295.
  14. ↑ "Together, we delete blood cancer". www.dkms.org. Retrieved 2023-02-24.

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