New England Program for Kidney Exchange

However, there is no guarantee that you will receive any benefit from participating in the Program. It is not known if or when you might be identified as part of a possible donor-recipient pair. The more participants in the Program, the more likely it is that you will be part of a pair identified for a possible donor-recipient exchange.

The risks and benefits of the donation surgery and the transplant surgery will be discussed with you in detail by the appropriate transplant center if and when you consent to move forward with a donor-recipient exchange. Agreeing to participate in this Program does not in any way commit you to donate a kidney or to consent to any particular surgery.

Where would the transplant take place?

The recipient's transplant will occur at the center they receive care. The donor will travel to the transplant center of their matched recipient for donation. This decreases risks involved in moving the donated kidney to a different transplant center. In both 2 pair and 3 pair exchanges all surgeries, donor and recipient, are performed on the same day, with the donor surgeries taking place at the same time. In other words the donor leaves the operating room having given a kidney the same day that their loved one leaves the operating room having received a kidney.

Potential recipients must meet all of the following criteria to participate in NEPKE:

Be willing to donate to a friend or relative but is unable to donate because of an incompatible blood type or positive crossmatch test.
Complete a series of medical and psychological tests
Be willing to travel to a transplant center - possibly in another state.
You do not need to live in New England to participate in NEPKE.

The chance of finding a match depends on a combination of many factors including:

The number of living donors each recipient brings into the program: a patient who has more than one willing donor, only one of whom will actually donate, has a greater chance of finding a match.
Recipient's blood type and sensitization: Individuals with common blood types and low sensitization will have a greater chance finding a match.
The number of participants registered in NEPKE: The greater the number of pairs in the system, the more likely a possible donor-recipient match will be identified.

Call NEPKE at 617-243-2557. NEPKE will provide you with information to discuss paired exchange with your transplant center.
Discuss participating in NEPKE with your transplant center.
Sign a form consenting to participate in a paired exchange and have health information released to NEPKE
Your transplant center will provide NEPKE with the information required to register.

How does the computer do the "matching"

Matching is based on sophisticated, cutting-edge mathematical formulas used to optimize matching pairs. For a detailed mathematical explanation of this process, please click here

What information will be entered into the Exchange Program Database? And how will the data be used?

Information entered into the database includes, but is not limited to: name, date of birth, relationship between donor and incompatible recipient, blood type, current medications and other health information necessary for identifying potential donor-recipient pairs.

Data entered into the Exchange Program Database will be used to identify potential donor-recipient pairings who may be compatible to maximize the number of transplants that can be achieved. Program staff, physicians and surgeons will review possible donor-recipient pairings. The data will be stored indefinitely unless or until a participant asks to withdraw or is no longer medically eligible.

Information collected will be entered into a database by a NEPKE coordinator. Your information will be reviewed by staff, Program consultants, physicians and surgeons. Otherwise, your information will remain confidential to the extent required by law. Access to the database will be through a secure, pass-word protected system and all paper copies of this information will be stored in a secure location. Your information will not be shared with anyone outside of NEPKE or the participating transplant centers without your permission. All other institutions (insurance companies and hospitals) have their own confidentiality information and those should be reviewed as well.

There are no direct risks of participating other than a minimal risk of loss of confidentiality in the event that the measures to protect your confidentiality described above are inadvertently breached. You may decide to withdraw from participating in the Program at any point.

It is unlikely but possible that you will not be identified in a donor-recipient exchange that would otherwise be possible because the number of exchange opportunities could be maximized by using other pairs or because such an exchange would not prioritize certain potential recipients that are granted priority such as children or sensitized patients.

There is no guarantee that you will receive any benefit from participating in the Program. It is not known if or when you might be identified as part of a possible donor-recipient pair. The more participants in the Program, the more likely it is that you will be part of a pair identified for a possible donor-recipient exchange.

You may experience a benefit from participating if you are identified by the Program in a possible donor-recipient pairing. In that case, the possible benefits of participating would include an identified potential opportunity to receive a live kidney donation (if you are a potential recipient) or an identified potential opportunity to receive the emotional benefit of donating a kidney to an individual in need (if you are a potential donor). The risks and benefits of the donation surgery and the transplant surgery will be discussed with you in detail by the appropriate transplant center if and when you consent to move forward with a donor-recipient exchange. Agreeing to participate in this Program does not in any way commit you to donate a kidney or to consent to any particular surgery.

The alternative is to not participate in the Program. If you are a potential recipient you should discuss the alternatives with your transplant surgeon (such as receiving a deceased donor kidney through the national waiting list maintained by the United Network for Organ Sharing (UNOS)). If you are a potential donor, your options include not donating a kidney or donating a kidney to someone else waiting for a kidney transplant. Refusal to participate in the Program will result in no penalty or loss of benefits to which you are otherwise entitled.

There will be no payments or compensation of any kind for participating in the Program.

Can pairs outside of New England participate in NEPKE?

Yes, if you are a potential kidney recipient registered at a transplant center outside the New England area you can participate in NEPKE.

Please contact us for more information.