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Anonymous Stem Cell Donation
Donations between recipients of stem cells and their unrelated donors are anonymous. Some donor registries allow direct contact between patients and donors one year following the transplant. Other donor registries allow contact after two years. Some donor registries never allow direct contact.
Many of our transplant patients have wanted to know more about their stem cell donor. The purpose of this summary is to let you know what we know and what type of contact is permitted between you and your donor.
Who Is This Wonderful Person?
It is quite natural for you to wonder about your stem cell donor. Who is this caring person who shares your tissue type and is willing to offer you the opportunity to have a stem cell transplant? Unrelated stem cell donors ARE special people.
We have been able to sketch a nice medical picture of your stem cell donor, but we actually know very little about them. We do not have any personal information on this volunteer. We do not know their name or have any contact information. They are known to us only as a code number.
We do know your stem cell donor's age and if they are male or female. I would be happy to share this information with you if you are interested.
Why Are Unrelated Stem Cell Donations Anonymous?
Donations are anonymous to protect both you and your donor. This protection allows each of you to make informed medical decisions in private. It also allows each party to maintain their privacy during at least the first year of transplant.
Will I Have Any Contact With My Donor?
Many donor registries allow you to correspond with your donor in an anonymous fashion.
Many recipients and donors send each other letters and gifts. These items are screened by our office and the donor center office for information which may identify either party. Items must not contain your name, place of residence, profession, or any other information that could identify you.
A member of our transplant team will travel to the hospital where your donor will have their stem cells collected. This transplant team member will be our stem cell courier and will hand-carry your new stem cells back to our transplant center. Most stem cells are transported using commercial airlines. Some of our patients have asked that a card and/or small gift be sent along with our courier and given to their donor on the day of donation. If you are interested in sending something to your donor at the time of donation, we are happy to make these arrangements.
What Information Is Screened From Correspondence?
Any information that may be used to identify you will be removed from cards, letters, gifts, or any other correspondence you send. Please do not include the following information:
- Names (First and/or Last Names)
Most of our patients sign their correspondence "your recipient"; no names are to be used including those of family members, friends, etc.
- Contact Information
No street addresses, telephone numbers, etc.
- Reference To Where You Live
This includes your city, state, and country (nearly half of our unrelated stem cell transplant patients receive their new cells from a caring donor who lives in another country).
- Profession
What Information Is Allowed?
Most people express their feelings about the donation and tell a little bit about themselves. It is fine to give information about your family, hobbies, etc.
Will My Donor Be Informed About My Medical Progress?
Yes, we will send updates on your medical condition to the donor center. The updates will be sent at the following intervals:
- 30 days post transplant
- 60 days post transplant
- 100 days post transplant
- 180 days post transplant
- 365 days post transplant
If, at any time, you would like to send a message or an update to your donor, simply contact us. We send updates using e-mail to donor centers around the world. We would be happy to send an extra message from you.
How Do I Begin the Process of Contacting My Donor After The Waiting Period is Over?
Simply contact our program office and we will send you a consent form to sign that gives us permission to release your personal information to your donor. To have direct contact with your donor they must also be willing to release information and sign a consent form. Your donor will work with their donor center to sign their form.
Where Do I Send Correspondence For My Donor?
Send cards, letters, gifts to:
Associate Director
Iowa Marrow Donor Program
University of Iowa Hospitals
C-332 General Hospital
200 Hawkins Drive
Iowa City, IA 52242
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