The National Marrow Donor Program® (NMDP) / Be The Match® and its affiliates and subsidiaries* are committed to respecting your privacy. Our websites and services are designed with your privacy in mind. Please see the information below to learn more about how NMDP uses the information you provide.
This statement regarding the privacy of the information you provide online covers:
What information we collect
This website collects personally identifiable information only if you voluntarily submit it. On some pages, you can update your contact information, choose to provide an online contribution, order materials, join the registry, answer health questions or submit other requests. The personal information collected on these pages is your name and contact information. In some cases, you may submit additional information as needed to complete your request.
If you register online for the Be The Match Registry®, we require that you provide certain personally identifiable information including your name, health information, address, phone number and, if you make a financial contribution or pay to cover the cost of your tissue typing, a credit card number. We need this information to process your registration or contribution and to contact you in connection with that registration or contribution. You may also be asked to provide additional health and contact information online if you are identified as a possible match for a patient.
If you choose to make a financial contribution to National Marrow Donor Program through its fundraising partner, the Be The Match Foundation, information related to your contribution – whether made online or offline – will be governed by this Online Privacy Statement. The transaction will be handled by a contracted third party payment card processor – who is compliant to the Payment Card Industry data security standards. This payment processor will not share your personal information other than with the NMDP and Be The Match Foundation. If you provide credit card information to make a financial contribution, that information is used solely for the purpose of completing that specific transaction and is not retained by NMDP.
When you make a financial contribution to Be The Match Foundation®, we may on occasion share information related to your financial contribution with third parties for the purposes of comparing your donation information in aggregate with the information of others to identify important trends that will help improve our fundraising efforts and expand our programs and services for patients. In addition, Be The Match Foundation may also share such transactional data on an aggregated basis (which will not identify any particular user) with third parties, such as vendors, advertisers, or business partners. These third parties may use this information to advise other third parties in their marketing and fundraising campaigns that may share your name and address, but not associated personal contribution details information, with those third parties.
We may also ask you to voluntarily provide us with information regarding your experience with cancer, personal or professional interests, demographics and contact preferences to tailor our subsequent communications with you and continuously improve our Website and services.
Personal Genetic Information
If you volunteer to join the Registry, you will be provided a cheek swab kit with instructions on providing a tissue sample to Be The Match. Be The Match will use your tissue sample to collect only the specific genetic typing information relevant to the success of a blood stem cell transplant. This genetic information will be stored along with your donor identification number within the Registry.
As a member of the registry, your genetic and personal identifying information may only be used or disclosed, as detailed in the consent, to (1) coordinate blood stem cell transplants for matching patients, or (2) for purposes related to the operation of the NMDP / Be The Match® and its affiliates and subsidiaries.*
We do not sell, rent or lease member information to third parties. Be The Match and its network centers follow strict rules designed to prevent unauthorized sharing of personal information. Absent a valid court order from law enforcement, your information will not be shared with law enforcement agencies.
As you browse through this website, the NMDP collects some non-personally identifiable data, such as:
- The type of browser used to access the site
- The date and time of your visit
- The pages you visited
- The address of the website that referred you if you clicked a link to get to this site
The NMDP collects this information for statistical purposes and for evaluating this website to make it more useful to visitors.
If you have signed up to receive information by e-mail from the National Marrow Donor Program the e-mail may contain a "click-through" URL. When you click one of these URLs, you pass through our Web server before arriving at the Web page that is your destination. We track click-throughs to help us determine your interest in particular topics and measure the effectiveness of our communications.
These tools allow us to include capabilities that provide a better user experience, make the website easier to navigate, and allow us to gather accurate information about the site so we can determine:
- How many visitors arrive
- How many are new versus repeat visitors
- How often a visitor has visited
We also may use tracking technologies for "retargeting" in our internet advertising campaigns so that third party vendors such as Google can show you advertising about Be The Match as you browse the internet. Retargeting is a marketing aid that identifies you as a previous visitor to the Be The Match website and targets you for specific outreach messages, encouraging you to revisit our website or consider donating. Again, these technologies capture only non-personal information (you will be anonymous).
Most browsers are initially set up to permit the use of web browser tracking technologies, but if you prefer, you can usually set your browser to refuse them or to notify you when you receive a new cookie or tracking pixel. You can also opt out of third-party digital tracking and advertising at the Digital Advertising Alliance WebChoices website.
Most browsers can be set to send a special signal to websites telling them not to track the user’s activities. Currently, we do not respond to “do not track” signals. Therefore, our websites may track and collect information about your online activities, despite any “do not track” signals we may receive.
How we use your information
When you choose to submit personally identifiable information (PII) to the NMDP, we use your information only for the purposes for which you submitted the information, or as otherwise described in this Privacy Statement. Learn more at "Who we share your information with."
Change of Address Requests
All information submitted to the NMDP via the Update Your Contact Information form will be forwarded from the NMDP Coordinating Center by e-mail to the donor center with which you are registered. A copy of the e-mail is retained at the NMDP Coordinating Center for back up purposes. Learn more at ‘Who we share it with.’
Preliminary Search Requests
Physicians can submit preliminary search requests for their patients through this website. The contact information and patient diagnosis and demographic information submitted in a preliminary search request are entered into the NMDP STAR® (Search, Tracking and Registry) system, and a preliminary search for potential donors is initiated. The STAR system is the secure, proprietary database system NMDP uses to facilitate all patient searches, track patient histories and maintain the Be The Match Registry of potential volunteer donors. Search results may be returned by e-mail, fax or mail.
When you submit other requests, such as materials requests, the NMDP uses your name and contact information for the sole purpose of completing your request. If you request materials, your name and contact information are kept in a limited-access database and are not sold or given to any other organization outside of the NMDP, other than to our contracted-vendors solely for the purpose of fulfilling your request.
Who we share your information with
The NMDP will not sell, rent or lease your personally identifiable information to others, other than as specifically described herein.
Unless we have your permission or are required by law, any personal data you provide us online will be shared only with other NMDP entities and/or business partners who are acting on our behalf to complete activities for purposes related to the operations of the NMDP/Be The Match, Be The Match Foundation, and the registry. Such NMDP entities and/or business partners, including those located in other countries, are required by agreement to protect the privacy of your personally identifiable information as set out in this Privacy Statement.
What are your choices?
The NMDP will not use or share the personally identifiable information provided to us online in ways unrelated to the ones described above without letting you know beforehand and offering you the opportunity to withhold your consent for NMDP to use your information in this way.
How we protect your information
The NMDP is committed to ensuring the security of your information. To prevent unauthorized access, maintain data accuracy and ensure the appropriate use of information, we have put in place reasonable physical, electronic and managerial procedures to safeguard and secure the information we collect online. This includes the use of modern encryption software, which encrypts the information you submit to keep it secure during transmission. In addition; we comply with applicable laws to safeguard your non public personal information against misuse, loss or unauthorized modification, disclosure or access.
Protecting Privacy of Children and Minors
Be The Match does not collect the medical, genetic or other highly sensitive personal information of minors. Further, we do not knowingly collect personal information from children (i.e., minors under the age of 13). If a child under the age of 13 has provided us with personal information, we ask that a parent or guardian contact our Data Privacy Office at email@example.com. If it comes to our attention that we have collected personal data from a minor under the age of 13, we may delete this information without notice.
We do however, on occasion, interact with minors ages 13+ (e.g., high school students) that wish to participate in our mission. In these circumstances, collecting the basic contact information of these minors is necessary. We recognize the particular importance of protecting privacy where children are involved. Where we knowingly collect personal information of children ages 13 or older, we require the consent of the child’s legal parent or guardian prior to collecting or processing the information.