For many blood cancer patients, a marrow transplant, also referred to as a stem cell transplant is not only a treatment option, it can also be a CURE. A lucky few have genetically matched siblings who can serve as donors, but the majority of patients (70%) rely on the kindness of strangers willing to step forward and donate. For a transplant to be successful, donors and patients must have nearly identical genes that regulate cells found in the immune system. These genes have evolved over the millennia in response to various disease threats. “Tell me where your ancestors lived 500 years ago, and I’ll tell you who your potential donors are, “said Dr. Jeff Chell, Director Emeritus at the Center for International Blood and Marrow Transplant Research.
Within the more than 50 international stem cell donor registries, there are only 38 million individuals registered, or less than .01% of the world’s population. Due to the lopsided nature of the existing donor registry population, there are sobering statistics for ethnically diverse blood cancer patients seeking a donor. For Caucasian patients, the likelihood of finding a match in existing donor databases hovers around 77%. Unfortunately, for Hispanic/Latino patients, the likelihood is only 46%, for Asian/Pacific Islander patients only 41%, and for patients of Black/African descent, only a 23% likelihood exists that a donor will be found.
Furthermore, if we separate patients of Middle Eastern, Eastern Mediterranean and coastal North African descent from the Caucasian statistics that they are usually grouped with, we find that these patients’ likelihood of finding a donor match can drop by as much as 50%. With this in mind, Marrow Mates developed a novel approach to donor recruitment that specifically assists ethnically diverse searching patients. More specifically, those with some degree of Middle Eastern, Eastern Mediterranean and/or coastal North African ancestry. “Research has shown that patients who have high concentrations of consanguinity (related marriages) in their ancestral lineage have a greater likelihood of finding a donor in their own extended family.,” says Jeff Haertling, founder of Marrow Mates. “When studies centered around consanguinity were originally published, reaching out to extended family meant reaching out only to known family members. Marrow Mates is taking a unique approach to donor searches for ethnically diverse patients by reaching out to all of their unknown genetic relatives as well.”
To do this, Marrow Mates enrolls searching patients in several commercially available genetic genealogy sites such as 23&Me, Ancestry.com and MyHeritage. When the DNA results come back, the patient now has a pool of previously unknown genetically linked relatives on which to focus donor recruitment efforts. This process provides a more patient-targeted approach than traditional donor recruitment efforts, which rely on in-person hands-on recruitment. There are many challenges with these traditional registry drives. First, they only reach the people who are physically present at the time of the drive, and who are willing to register at that time. Second, during a pandemic event, a hand’s on stem cell drive is not always possible to execute. Third, the people who register at a local drive may not be of the same genetic make up as the searching patient.
The Marrow Mates recruitment process addresses these challenges. As Haertling states, “the Marrow Mates approach is globally reaching, digitally executed and genetically precise.” The new process yields a larger population of potential donors having a higher probability of being a genetic match. Per Haertling, “the first searching patient we enrolled had no matches in the international registries and only personally knew of one cousin. When we received the DNA results, we were blown away as we had identified over 14,000 previously unknown genetic cousins from the second to fourth power.”
Using the genetic genealogy sites, Marrow Mates staff members, called “Hero Recruiters” reach out to the patient’s genetic matches to inform them of their “cousin’s” blood cancer diagnosis and to provide awareness on the stem cell donor registries available in their country. Although the main objective is to find a stem cell match for the searching patient, the program is also helping educate people who may otherwise never know about this need and how they can help. By sharing personal stories about a patient with their distant relatives, the process is turning unknown relatives into known, and further diversifying the global pool of bone marrow donors for the benefit of blood cancer patients around the world.