25-30 minutes

What Is a Donor Registry?

Learn how donor registries work, why they exist, and how they connect patients with potential donors.

Learning Objectives

Explain the purpose and function of donor registries
Describe the process from registration to potential donation
Understand why voluntary participation and informed consent are essential

Materials

Whiteboard for process diagram
Note-taking materials

Lesson Content

Introduction: The Matching Problem (5 min)

"Remember how we learned that bone marrow matching is complex? Thousands of HLA combinations exist."
"Only about 30% of patients can find a matching donor in their family (Source: NMDP / Be The Match)."
"The other 70% need to find a match from an unrelated donor. But how?"
"This is where donor registries come in—they're like a matching service for patients and potential donors."

How Registries Work (10 min)

Step 1: Registration

Adults (typically ages 18-35) can join a registry voluntarily
They provide a cheek swab or blood sample for tissue typing
Their HLA information is stored in a database

Step 2: Searching

When a patient needs a transplant, their doctor searches the registry
The search looks for HLA matches among all registered donors
Multiple registries worldwide cooperate to search globally

Step 3: Contact

If a potential match is found, the registry contacts the donor
The donor receives more information and additional testing
The donor can always say no—consent is required at every step

Step 4: Donation

If the donor agrees and passes health screenings, donation is scheduled
Most donations today use a non-surgical procedure called peripheral blood stem cell (PBSC) collection (Source: NMDP / Be The Match)
The donated cells are transported to the patient

Key Principles (5 min)

Voluntary: No one is ever forced to donate. It's always a choice.
Informed consent: Donors receive complete information before deciding.
Confidential: Donor and patient identities are typically kept private.
No cost: Donors are never charged; all costs are covered.
Safety: Medical teams ensure both donor and patient safety.

The Numbers (3 min)

The US NMDP registry has tens of millions of potential donors (Source: NMDP / Be The Match; check the source link for the current figure).
Globally, the World Marrow Donor Association (WMDA) reports more than 40 million registered donors and cord blood units across cooperating registries (Source: WMDA Annual Report).
Yet some patients still cannot find a match—especially those from diverse backgrounds
This is why registry diversity matters (more on this next lesson)

Closing (2 min)

"Registries represent communities coming together to help strangers."
"Next lesson, we'll explore why diversity in registries is so important for health equity."

Activity: Case Study Analysis

Fictionalized Scenario:

"Mia is 12 years old. Her younger brother, Jayden (age 8), was diagnosed with a blood disorder and needs a bone marrow transplant. Unfortunately, no one in their family is a match. The family learns that they need to search the national registry."

Why couldn't Jayden's family members be donors? (Not every family member matches)
What steps will happen now that they're searching the registry?
If a match is found, what choices does that donor have?
Discussion: How might it feel to be a patient waiting for a match? How might it feel to be called as a potential donor?

Registry: A database of people who have volunteered to potentially donate blood stem cells or bone marrow.
Tissue Typing: The process of determining a person's HLA markers to find matching donors.
Match: When a donor's HLA markers are compatible with a patient's, making transplant possible.
Anonymous: When identity is not revealed; many donations are anonymous to protect privacy.
Consent: Giving permission after being fully informed; donors must consent at multiple steps.

Discussion Questions

Why is it important that donation is always voluntary?
What do you think motivates people to join a donor registry?
Why might some people choose not to donate even if they're a match?
How is a donor registry similar to or different from other volunteer organizations?

Optional Extension

Create a flowchart showing the journey from patient diagnosis to finding a match. Include decision points where the donor can say yes or no.