NMDP Online Privacy Statement
Effective September 2018
The National Marrow Donor Program® (NMDP) (which operates Be The Match® and the Be The Match Registry®) and the Be The Match Foundation® (collectively referred to for the purposes of this Online Privacy Statement as "NMDP" or "we") are committed to respecting your privacy. The NMDP Web sites (BeTheMatch.org, Marrow.org and BeTheMatchClinical.org, or any subdomain thereof, collectively referred to here as the "Website") have been structured so you can visit them without revealing any personal information. If you choose to provide the NMDP with personally identifiable information (any information by which you can be identified), you can be assured it will be used only to support your relationship with the NMDP.
This statement regarding the privacy of the information you provide online covers nine main areas:
What We Collect
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, Be The Match® or Be The Match Foundation, 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.
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 Blackbaud Inc., an Internet software and services company that provides online constituent relationship management solutions for nonprofit organizations. All information collected by Blackbaud is encrypted and transactions are conducted through a secure socket layer (SSL). Blackbaud will not disclose your name or any other personally identifiable information (such as your e-mail address) to any party other than the National Marrow Donor Program and Be The Match Foundation. Neither NMDP nor Blackbaud store sensitive information such as credit card numbers. 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 or Blackbaud.
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.
We use persistent cookies. A cookie is a small text file that contains no personally identifying information and that is placed into the memory of your browser. If the lifetime of the cookie extends beyond the time you spend at the site, the file is saved
for future reference and is a “persistent cookie.”
Persistent cookies 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
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, the cookies contain only non-personal information (you will be anonymous).
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 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, 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 Information With
The NMDP will not sell, rent or lease your personally identifiable information to others.
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 the activities described above. 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 my 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 Children’s Privacy Online
NDMP website is not directed or intended for use by individuals under the age of 16 without the agreement and involvement of a parent or guardian. NMDP does not knowingly collect personal data from Minors. If it comes to our attention that we have collected personal data from a Minor, we may delete this information without notice. If you have reason to believe that this has occurred, please contact us.
For our partners who operate in the European Union (EU), NMDP has invested in the operational processes that meet the requirements of the European Model Clauses for the transfer of personal data to processors. Our contract with you includes the Model Clauses, referred to as Standard Contractual Clauses that make specific guarantees around transfers of personal data for specific services. This ensures that our partners can transfer personal data from the European Economic Area (EEA) to NDMP.
How You Can Contact Us
Be The Match® (Operated by the National Marrow Donor Program® (NMDP)
500 N 5th St.
Minneapolis, MN 55401-1206