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The Registry - National Kidney Registry - Facilitating Living Donor Transplants
The National Kidney Registry is a nonprofit organization registered under
the laws of the State of New York. The Registry was founded on one simple fact
– the larger the pool of recipient/donor pairs, the faster people facing
kidney failure can get matched and transplanted and the higher the quality
of the matches. This simple math will save/improve the lives of thousands of
people facing kidney failure. The National Kidney Registry was established to
assist people facing kidney failure in getting the highest-quality kidney as
fast as possible.
Navigation Expert
The Registry, working as your agent, will help you navigate the complex
transplant and donor exchange process. From the time you register with us,
we will assist you in managing and coordinating all aspects of the process,
which includes collecting medical information, obtaining preference information
from you and your donor(s), working to list you and your donor(s) in the
Registry’s BestMatch programs, finding you the best exchange match,
and helping you organize the details relating to the transplant operations,
including travel and lodging.
Your Dedicated Agent
The Registry works solely on behalf of its clients, representing their best
interests. We are not owned or controlled by any medical institutions, insurance
companies, or government agencies. As a result, we operate independently with
a laser focus on maximizing a recipient’s chances of finding the best
kidney possible in the shortest amount of time. We work for you, as your agent,
to understand your unique situation and remove any obstacles that get in the
way of your objective.
Experienced, Compassionate, and Committed
The Registry is made up of experienced, compassionate, and committed people who
are here to serve you. Our focus is getting high-quality transplants completed. We
believe that as the Registry grows, the quality of the matches made will improve,
and the time it takes to find a match will be greatly reduced. We believe that
someday very few direct living kidney donations will occur because the quality
of exchange matches will exceed all but six antigen sibling matches.
The Registry Process
The National Kidney Registry has developed an end-to-end digital workflow
that automates much of the manual processes that are currently employed to
facilitate kidney exchanges. This process streamlines all seven phases of
Registry activities.
In paired exchange donation, a donor wants to donate to a specific
recipient and is either incompatible or poorly matched. In this case, the donor
donates to someone else in an exchange that better matches the donors to the
recipients. The first paired exchange was performed in 2000 at Johns Hopkins
Hospital and since then this process has been growing in frequency, driven by
the significant benefits of better matching between donors and recipients and
the tremendous need for kidneys. To read more about paired donor exchange,
please see our News Room.
The total costs associated with donor/recipient evaluations, the kidney transplant,
post-transplant follow-up, and other related expenses will be somewhere in the range
of $100,000 to $200,000. For U.S. residents, most of these medical expenses will likely
be covered by private insurance or Medicare.
Donor Costs
Many of the donor costs which are non-medical in nature are not covered by insurance and must be paid by the donor or the recipient. Major donor costs include travel, lodging, meals, and lost wages and generally range from $500 to $20,000 for domestic transplants. Below are examples of hypothetical donor expenses:
Typical Donor Expenses
Example 1: 2 weeks off, medium size city, car trip
Example 2: 5 weeks off, big city, air travel
Trip # 1 (Full Evaluation)
Car Trip
$
100
Airfare – One Person
$
2,000
Hotel – 1 nights @ 200/night
$
200
Hotel – 2 nights @400/night
$
800
Meals – 2 days @$100/day
$
200
Meals – 3 Days @ $100/day
$
300
Lost Wages – 2 days @$200/day
$
400
Lost Wages – 3 Days @ $200/day
$
600
Trip # 2 (Transplant Surgery)
Car Trip
$
100
Airfare – 2 people including caregiver
$
4,000
Hotel – 5 nights @ $200/night
$
1,000
Hotel – 10 nights @$400/night
$
4,000
Meals – 5 days @$100/day
$
500
Meals – 10 days @$100/day
$
1,000
Lost Wages – 2 weeks @$1,000/wk
$
2,000
Lost Wages – 5 weeks @$1,000/wk
$
5,000
Total
$
4,500
$
17,700
Our Fees
There are no fees for recipients and donors who are working with our participating centers.
We will do our best to find you a compatible kidney in the shortest amount
of time. Many factors will influence the amount of time you have to wait,
such as how many donors you have, their blood type, age, travel restrictions,
etc. We support you by providing you updated information regarding our search
progress in the form of daily e-mails so you know where we are in the process.
2. I am a recipient – do I have to travel out of state?
Recipients do not need to travel anywhere other than to their transplant
center. Some recipients may be willing to change transplant centers, which
would expose them to more potential donors. If this is the case, the recipient
should communicate this information to a Registry counselor at the time the
recipient’s preferences are collected. This decision could be very
impactful if, for example, the recipient is at a transplant center that does
not do laparoscopic kidney removal and there are well matched donors in the
system that have indicated that they will not donate unless the surgery is
done with a laparoscopic procedure.
3. I am a donor – do I have to travel out of state?
Donors must travel to the recipient’s transplant center to donate
their kidney. Recipients can indicate what state and what countries they are
willing to travel to in order to get a matching donor for their recipient (this
is a preference in the Registry database). If the donor sets an unrestricted
travel preference, it will increase the chances that their paired recipient
will be matched sooner and that it will be a higher-quality match.
4. Can I use my same doctors and hospitals?
Recipients can use the doctors and hospital that they have chosen for
the transplant surgery. Donors can use their personal physician to initially
determine if they are qualified to donate and for some of the post-operative
follow-up, but they are required to travel to the recipient’s hospital
for the transplant operation.
5. How many paired donors do I need to register?
You need only one paired donor to register. However, you improve the chances
of finding a compatible well-matched donor if you are able to register with
more than one paired donor. For more tips on getting a great outcome
go to tips section.
6. What if I don’t have any donors, can I still register?
Yes, but you can only be activated for a kidney exchange if you have at
least one paired donor activated in the Registry. If you do not yet have a
committed living donor, the Registry can be used to help you with your donor
search. The Registry is a good reference for people considering donating a
kidney (living donor tab). The Registry will also make it easier for you to
deal with financial aid for donor expenses and easier for your potential donor
to manage the medical records process. Please see
our tips page
for tips on how to conduct an effective donor search campaign.
7. What if I have health problems?
An individual must be in good health to donate or receive a kidney. The
recipient must be evaluated by a transplant center, which will make the
determination if the recipient is healthy enough to undergo a transplant. The
Kidney Registry is not a healthcare provider. The recipient’s transplant
center will also have the final say related to the health of the donor. Generally,
transplant centers will accept donors based on these health guidelines
(Read Health Guidelines for Living Donation).
8. Do I need to be registered with a transplant center or will the Registry
do this for me?
The Registry will assist you in deciding what transplant center best meets
your needs, but you must be evaluated at that transplant center and they must
determine that you are medically qualified for a transplant before you can
schedule a transplant. You may “list” at more than one transplant
center. This is usually a good strategy when someone is seeking a deceased
donor kidney.
