Cord Blood Registry’s New Disease Registry Brings Data & Families Together to Advance Stem Cell Research

SAN BRUNO, CA – JUNE 8, 2015 – Cord Blood Registry® (CBR®), the world's largest newborn stem cell company, today announced the launch of CBR’s Family Health Registry, a unique registry designed to offer insight into common diseases and conditions affecting families and to bring patients, healthcare professionals and researchers together to expedite and facilitate research related to the discovery of stem cell treatments and potential cures.


“CBR’s Family Health Registry creates a unique opportunity to provide access to vast amounts of family health data that will inform and advance stem cell therapy research,” said Geoffrey Crouse, President and Chief Executive Officer of Cord Blood Registry. “CBR is empowering families to take an active role in their family’s health monitoring and simultaneously support the advancement of stem cell medicine. CBR is now able to utilize health data from families to help identify and focus research on common diseases and conditions that may be treatable through newborn stem cell therapy, while we continue to develop our network of leading clinical researchers focused on conditions that impact our families.”


The Family Health Registry provides CBR with a powerful data-driven tool that strengthens its research capabilities. More than 100,000 families who entrust CBR with their newborn stem cells have already demonstrated their interest in moving the science forward by opting into the Family Health Registry. With today’s official launch, CBR is inviting every new family to be part of this important initiative.


“The Family Health Registry will be able to track patients over time and develop longitudinal data across hundreds of thousands of families,” said Joel Weinthal, MD, pediatric hematologist-oncologist at Texas Oncology. “As these families age, the registry is enriched with additional phenotype and medical information which will enable us to understand the diseases that impact families as they grow, how they are treated now, and opportunities to improve health and access to emerging medical technologies based on each family’s specific situation.”


The registry serves as an extension to CBR’s Newborn Possibilities Program®, which uses health history screening to identify families who may benefit from cord blood banking and offers free newborn stem cell processing and storage for five years to families with a qualifying medical need. To date, the Newborn Possibilities Program has enrolled more than 6,000 families, storing newborn stem cells for at-risk individuals, releasing more than 70 units for therapeutic use, and connecting patients to FDA-approved autologous cord blood clinical trials.


Profiled health data from family respondents is already yielding valuable information. For example, based on recent survey data, although CBR’s clients are relatively young, a surprisingly high number of families (approximately 1 in 7) have at least one indicated condition that might benefit from stem cell transplantation and/or potentially from the use of autologous or related allogeneic stem cells in regenerative medicine therapies.


“The combination of individual medical and familial information in an accessible database will empower families interested in preventing illness or reducing risk of disease. It will also help researchers develop insights that may improve outcomes and uses of novel technologies including those using stem cells,” said Paul Billings, MD, PhD, chief medical officer of Omicia, and former founder of CBR. 

The most common transplant indications reported among first-degree family members were: 

  • Non-Hodgkin’s Lymphoma (18.9 percent)
  • Hodgkin’s Lymphoma (17.7 percent)
  • Acute Lymphoblastic Leukemia (16.2 percent)
  • Sarcoma (8.1 percent)
  • Acute Myelogenous Leukemia (6.5 percent)
  • Sickle Cell Disease (5.7 percent) 

The most common regenerative indications among children with stored umbilical cord blood were:

  • Autism/Autism Spectrum Disorder/Apraxia (37.2 percent)
  • Other Developmental Delay (26.5 percent)
  • Congenital Heart Defect (15.8 percent)
  • Childhood Hearing Loss (8.2 percent)
  • Type I Diabetes (5.3 percent)
  • Cerebral Palsy (4.9 percent)

“As president of the U.S. Women’s Health Alliance, an organization representing 1500 physicians caring for 8 million women nationwide, we recognize that for research in regenerative medicine to evolve, it will be important for our patients and their families who store cord blood to share health data. This information can help to influence what newborn stem cell clinical trials develop in the years to come,” commented Jack Feltz, MD.


CBR, the world’s largest newborn stem cell company, is in a unique position to engage the global research community to investigate new applications for stem cell and regenerative medicine therapies. CBR is in discussions with partners to provide additional health services and access to clinical research which could also benefit patients and their families. 


About Umbilical Cord Blood

As recently as 25 years ago, umbilical cord blood was considered medical waste. However, it is a rich source of hematopoietic stem cells. To date, umbilical cord blood cells have been used in more than 35,000 transplants to treat a variety of life-threatening conditions, including hematologic malignancies, hemoglobinopathies, and metabolic and immune disorders. Umbilical cord blood stem cells also are being researched for their regenerative medicine applications where they may repair organs and tissues outside of their hematopoietic lineage.


Current trials in the U.S. are studying regenerative uses of umbilical cord blood stem cells for a wide variety of conditions including:

  • Cerebral Palsy – Approximately 8,000 to 10,000 babies born in the U.S. each year will develop cerebral palsy (Source: CerebralPalsy.org)
  • Ischemic/Hypoxic Brain Injury – Approximately 20 out of every 1,000 full term births and 60 percent of all premature births in the U.S. are affected by Ischemic/Hypoxic Brain Injury (Source: CerebralPalsy.org)
  • Autism – Approximately 58,000 children are diagnosed with autism each year in the U.S. (Source: CDC)
  • Acquired Hearing Loss – Approximately 12,000 babies born each year in the U.S. have hearing loss (Source: Boston Children’s Hospital/NIH)
  • Hypoplastic Left Heart Syndrome – Over 900 babies in the U.S. each year are born with Hypoplastic Left Heart Syndrome (Source: CDC)

About CBR’s Newborn Possibilities Program

Expectant families may be eligible for CBR's Newborn Possibilities Program if a family member has been diagnosed with certain cancers, such as leukemia, or blood, immune, and metabolic disorders, such as sickle cell anemia, DiGeorge syndrome, and Krabbe disease, which may require a cord blood transplant. Families may also qualify if their newborn is at-risk for a medical condition, such as cerebral palsy, for which cord blood stem cells are currently being investigated as a potential treatment option.


CBR's certified genetic counselors serve as a trusted resource for families interested in learning about how newborn stem cells might be applicable as a potential treatment option. Through family history screening, CBR's genetic counselors can identify families who may benefit from cord blood banking. In addition, the team of certified counselors identifies and assists families eligible to participate in FDA-regulated clinical trials, communicates directly with families in need of a cord blood transplant, and informs clients of their options if their cord blood unit does not adhere to CBR quality standards.