How can I participate in a clinical trial?

Disclaimer: Save the Cord Foundation does not operate, endorse or participate in any clinical trials. The following is presented for informational purposes only. Information presented on this site is not intended to be comprehensive and does not imply endorsement of any kind. Likewise, this information is not intended as medical advice. Participation in any study or clinical trial should always be discussed in detail with your healthcare provider. 

Doctor speaking with a patient (NIH Clinical Center)

The Basics

What is a clinical trial?

A clinical trial is used to test new procedures and/or drugs to detect, prevent or treat disease. Clinical trials are crucial to advancing all fields of medicine. Participation in clinical trials is voluntary and you should always ask about the potential risks or side effects involved.


What areas of medicine are currently being studied in cord blood clinical trials?  

Clinical trials using cord blood are happening throughout the world and are advancing at a dynamic pace. While cord blood is currently accepted and used to treat over 80 different diseases including many blood cancers, doctors and scientists continue to push research in this area. In addition, cord blood is showing great promise in the emerging field of regenerative medicine to potentially treat spinal cord injury, brain injury, autism, cerebral palsy, hearing loss, diabetes and much more. 

Many of these clinical trials are made possible thanks to private cord blood banks who are interested in finding new ways that their clients could possibly use cord blood stored at their facility. Regenerative medicine is a common focus of these types of trials. It is interesting to note that it is typically easier to obtain the necessary research approvals for autologous cord blood transplants (using one's own cord blood rather than a family member or a stranger) than for allogeneic transplants (from a donor). In addition, matching is not an issue for autologous transplants. ​

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Are there any minimum requirements to participate in a cord blood clinical trial? 

Minimum requirements vary greatly from one study to the next. Many cord blood clinical trials are available to children (with parental/guardian consent, of course).


Is participation limited only to those who privately banked their child's cord blood? 

No. Depending on the study, researchers may be using donated cord blood.


Will I get paid for participating in a clinical trial? 

You will not necessarily be paid for participation in a clinical trial. Some studies may offer payment, stipend or compensation for expenses. Others do not provide any financial compensation to participants. If this is important to you, please clarify the terms of participation prior to registering. Likewise, you should review the terms with your insurance provider prior to officially participating as they may or may not be willing to help.
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A few of the key questions to ask about a clinical trial:

- What is the goal or purpose of this clinical trial?
​- What "phase" is this study?
- Who is sponsoring this study?
- Who is the Institutional Review Board (IBR) for this study?
- How long will the clinical trial last?
- What short term / long term benefits are expected? 
- What short term / long term risks are expected?

- Does this trial build on previous results? If so, what exactly?
​- Does this trial include a "compassionate use" program ensuring that participants will have access to the treatment even prior to market release?
- What is the protocol for the study? What is required from the participant in terms of appointments, medicine, reporting, tests, restrictions, contraindications, etc?

How can I find a clinical trial using cord blood?

There is not just one way to find a clinical trial using cord blood. Throughout the world there are multiple databases and registries for on-going medical research.  As always, we recommend you start by asking your doctor about participation in any cord blood clinical trials. Based on discussions with him/her, you may wish to research cord blood clinical trials on your own. If so, here are few sites and tools that can help: 

• ClinicalTrials.gov: Funded by the National Institute of Health (NIH-US), this is a searchable registry and results database of federally and privately supported clinical trials conducted in the United States and around the world (includes studies from 203 countries). Any information obtained via this site should be carefully discussed with your doctor.
  
  
• World Health Organization (WHO) Clinical Trial Search Portal: This is an international database of clinical trials and acts as a consolidator of other databases; however, it is not a registry. If you wish register for trials listed on the search portal, please follow the instructions on this site.
  
  
• ResearchMatch.org: ResearchMatch.org connects volunteers with studies (not just clinical trials).  Partially funded by the NIH-US and CTSA award program, it was created by academic institutions across the United States. Anyone living in the United States can register and use the service for free.
  
  
• Australian New Zealand Clinical Trials Registry (ANZCTR): This is a searchable database for trials in Australia, New Zealand and elsewhere. Once you find a trial that interests you on the database, you will can contact the person responsible to find out how to participate. In addition, if you are interested in the CoRD study led by Dr. Maria Craig using cord blood to potentially treat diabetes, please send an email to:  SCHN-CHW-Cord@health.nsw.gov.au​ 


• EU Clinical Trials Register: This database provides extensive details on clinicals trials throughout Europe. 
  
  
• Chinese Clinical Trial Registry (ChiCTR): Established in 2005, this registry provides the ability to register for trials, consultation for trial design, central randomization for an allocation sequence, peer review for draft articles and training for peer reviewers.
  
  
• UK Clinical Trials Gateway:  This site offers a searchable database and guidance to patients in the United Kingdom wishing to participate in a clinical trial.
  
  
• Additional list of registries: Compiled by the NIH-US, this is not a comprehensive list of registries. However, it could provide a starting point for some patients.
  
  
• Contact your private cord blood bank:  If you have privately stored your child's cord blood and would like to know if it could be used in clinical trial, contact your bank directly. They may be involved directly or indirectly with on-going cord blood clinical trials in your area of interest. 

About the photo in the top banner:
Diane Paradise is a 5X cancer survivor and cord blood recipient. After a long struggle with Hodgkins Lymphoma, she was given the opportunity to participate in a clinical trial. She was very fortunate. The decision to participate in this particular study saved her life.