Prior to today, have you ever done a cheek swab to register as a donor?
Please Select Registry:
A Family Member or Friend Who Can Reach You
Hemeos needs potential donor health information to determine if they are suitable donors. Answering yes to a question does not necessarily eliminate you from being a donor, but may require more follow up if selected as a donor.
Have you ever been diagnosed or treated for any of the following conditions?
2. Have you ever had cancer?
3. Prescription pain medication?
4. Anxiety or depression?
5. Autism or Asperger’s syndrome?
6. ADHD or ADD?
7. High Cholestrol?
8. Any heart disease?
10. Chronic Fatigue Syndrome?
12. Kidney Stones?
15. An Aneurysm?
16. Any Blood Clotting Disorder?
20. Have you ever had any autoimmune disease?
21. Have you ever had a concussion?
22. Long term infections disease such as Hepatitis, Herpes, HIV, etc?
23. Chemotherapy or radiation therapy?(Radioactive Iodine treatment for thyroid cancer is acceptable. Localized bead radiation for prostate or breast cancer is acceptable)
24. Chronic, on-going, significant pain to areas of the spine, back, or neck that interferes with you daily activities AND requires regular chiropractic treatments or regular physical therapy?
25. Have you smoked at least 100 cigarettes in your lifetime?
26. Has anyone in your immediate family (parents, siblings, or grandparents) been diagnosed with Alzheimer’s?
27. Please list any diagnosis or treatment for any conditions not mentioned above, if any.
28. Please list any prescription medications you've taken for anything mentioned on this form.
Donor Information and Consent Form
Please carefully read the entire donor information and consent form. Donating is a major commitment and we want donors to understand the whole process. If you decide to participate as a potential donor, and later change your mind, you are free to withdraw at any time. Hemeos will use commercially reasonable efforts to delete your Registration Contact information from our systems.
Initial registration entails a collection of cheek cells from inside your mouth using a cotton-tipped swab. This swab is sent to a laboratory for human leukocyte antigen (HLA) typing. The results are stored for matching your HLA typing with patients in need of an unrelated donor. You should be aware marrow or peripheral blood stem cell screening, workup, and donation may require approximately 20 hours of your time. If you are identified as a potential match for a patient, additional confirmatory typing will be required. This will entail a blood sample as well as infectious disease testing. Once confirmatory typing has identified you as a suitable match, you will undergo a medical screening to ensure you are physically capable of donating. You will then be eligible for one or both of the following donation procedures.
1. Blood Stem Cell Donation: This is an outpatient procedure not requiring anesthesia used in 70% of donations. The donor receives injections of a synthetic protein called filgrastim (neupogen) for 5 days to produce enough stem cells for an effective collection. Filgrastim stimulates the release of stem cells from the bone marrow into the blood system. These cells are collected through a procedure called apheresis. A centrifuge separates the stem cells from the rest of the blood, which is then infused back to the donor. The process takes approximately 4 hours in the recipient.
2. Bone Marrow Donation: This is an outpatient procedure requiring anesthesia used in 30% of donations. Approximately 3% of the donor's marrow from the pelvic bone is removed with a needle and syringe. The procedure is approximately 1-2 hours and the donor goes home the same day.
Donor Compensation: You will be compensated up to $2000 as outlined in your donor contract for completing a donation. This is contingent on the legality of donor compensation at the time and location of the donation. Be aware at this time peripheral blood stem cells are the only product for which compensation is legal in the United States. Bone Marrow donation is not eligible for financial compensation. Compensation will be processed following the transplant procedure for the patient and the determination that infectious disease marker testing was negative in all tests. Donors who knowingly or unknowingly attempt to transmit an infectious disease through their donation will not be compensated. You will not be charged for any portion of the donor workup and any travel expenses will be covered by HEMEOS or its partners.
CONSENT FOR REGISTRATION
I have read the information provided, and agree to register as a potential blood stem cell or bone marrow donor. I authorize Hemeos to determine and store my HLA tissue type. I authorize follow-on testing to be conducted if required. I understand Hemeos will provide my HLA typing to transplant centers searching for unrelated donors for their patients and Hemeos will contact me if I am matched to a patient. I understand that while I am under no legal obligation to proceed, I have considered my wish to volunteer seriously and intend to donate if called upon.
I have read and understand the Donor Registration and Consent to register with Hemeos and agree to its term.
Research Consent Form
Research Consent Release
Hemeos works with researchers, universities, and healthcare organizations to advance medical science. We would like you to participate in these efforts in addition to being a blood stem cell or bone marrow donor.
If you choose to participate Hemeos will share your individualized information and buccal cheek swab information with these partners. Your registration information (name and contact information), will NOT be shared unless we receive additional, explicit consent from you via phone or email. Your identify is protected at all times. Additionally, we may contact you with additional questionnaires or testing that may be incentivized for you.
There is a very small chance that someone with access to the research data or results could expose personal information about you. Hemeos has policies and practices in place to minimize the chance of such an event.
You can withdraw at any time. If your data that has been entered into a study already it cannot be withdrawn, but future use of your data will not occur 30 days after you withdraw.
"Genetic and Self-Reported Information" refers to: Your genetic data, Health related data, Information you enter into surveys, forms and other features sent by Hemeos, Your age and ethnicity.
By signing my electronic below, I agree to let Hemeos use my Information, as described above.
I have read an understand the Research Consent Release and agree to its terms.
General Information Definitions
Aggregate Information: Information that has been combined with that of other users and analyzed or evaluated as a whole, such that no specific individual may be reasonably identified.
Anonymous Information: Information that has been stripped of your Registration Information (e.g., your name and contact information) and other identifying data such that you cannot reasonably be identified as an individual.
Genetic Information: DNA based information that distinguishes you based off your A-T-C-G order within your individual genome. Additionally this includes your human leukocyte antigen (HLA) typing. These are identified using your buccal cheek sample swab.
Health Related Information: Information about your personal health that you report in questionnaires or surveys to Hemeos.
Individualized Information: Information about a single person's genetic or health related information, but which is not necessarily tied to Registration contact Information.
Registration Contact Information: Information that can be used on its own or with other information to identify, contact, or locate a single person, or to identify an individual in context. Common examples as used by Hemeos include your name, email, phone number, address, or any other unique information to identify you when you initially register for Hemeos.
Web Based Information: Information about your interactions with the Hemeos website (time on site, mobile vs. desktop, web browser) collected through log files, cookies, and web beacon technology.
Information Collection Process and Type
We will record and store web based information for visitors to our website. This includes, but is not limited to, length of time spent on the Website, date the Website was visited, IP address, type of browser, cookies that brought you to our site along with other similar tracking technologies. We use this information to improve the effectiveness of the Website as a recruitment and marketing tool for HEMEOS.
Upon initial registration into the HEMEOS registry, you will be asked registration contact information including name, mailing address, telephone, email address and self-reported health related information. If selected as a possible match for a patient and you choose to go forward with donation, you will be required to submit further health related information.
Hemeos will send you a buccal cheek swab kit after you complete registration online or provide a swab kit at an in person drive. This sample is sent to our partner lab for HLA and other DNA testing, which are both considered genetic information. This sample is stored in a repository at the lab for further testing, if required. The lab does not have personally identifying information to link your sample to you. Each sample is identified by the lab based off a serial number provided by HEMEOS labeled on your swab kit. By participating, you give Hemeos and its laboratory partners permission to obtain genetic information from your cheek swab sample.
The genetic information will be sent by the lab to Hemeos and stored by Hemeos. Hemeos has instituted physical, electronic, and personnel protocols to ensure your data is protected. However, we do not warrant the security of information provided to Hemeos. Hemeos cannot guarantee information you provide Hemeos will remain free from loss, misuse, or alteration by third parties through unauthorized access.
We will also ask for contact information of one or more of your relatives or close acquaintances. We use this relatives and acquaintance information in order to have further contact information if you are identified as a donor but we cannot reach you through the contact information you provided. We may verify with these relatives or close acquaintances the information you have provided. By providing Hemeos their contact information, you affirm they are aware and willing to participate in this process.
Hemeos will also requests that you refer friends or family members who you think would be interested and qualify to be in the Hemeos registry. When you refer someone, we will ask for their contact information. We will use this information only for contacting that individual to be on the Hemeos registry. By participating in a referral program and sharing contact information, you confirm that individual being referred has given you consent for Hemeos to contact him/her.
Hemeos appreciates that the information you share with us is sensitive. We are committed to be transparent in how we use and share this information, and that you provide your explicit consent for us to utilize this information. We will not share your registration contact information or individualized information without your consent. Exception include if we are legally compelled to provide the information to a third party. Under certain circumstances your information may be subject to disclosure pursuant to judicial or other government subpoenas, warrants, or orders, or in coordination with regulatory authorities. Hemeos will preserve and disclose any and all information to law enforcement agencies or others if required to do so by law or in the good faith belief that such preservation or disclosure is reasonably necessary to: (a) comply with legal or regulatory process (such as a judicial proceeding, court order, or government inquiry) or obligations that Hemeos may owe pursuant to ethical and other professional rules, laws, and regulations; (b) enforce the Hemeos Terms of Service and other policies; (c) respond to claims that any content violates the rights of third-parties; or (d) protect the rights, property, or personal safety of Hemeos, its employees, its users, its clients, and the public.
We will use your information to internally determine if you should be contacted to participate in additional questionnaires or testing. These are optional and you are not obligated to participate. Donor will potentially be incentivized for the questionnaires or testing on a case by case basis.
Hemeos uses your information to facilitate medical services to treat patients requiring a bone marrow or stem cell transplant. We will also use the individualized information you provide with third parties for advancement of medical research only if you sign the Research Consent Release. Even with your agreement, we will not share your registration contact information in conjunction with your health information or genetic information unless we receive additional consent from you via a phone call or email. If you do not agree to the Research Consent Release, you can still be on the registry as a potential blood stem cell or bone marrow donor. However, you will not be eligible to participate in additional questionnaires or medical studies that potentially offer incentives for participation. Additionally, genetic information and health related information may still be used by us and shared with our third-party partners that is compiled as anonymous information or aggregate information so that your identity is protected.
By participating, you also consent to your registration contact information, genetic information, and health information being transferred in the event of an acquisition or merger between Hemeos and another company. An example of this is another registry similar to Hemeos. Your information would be used as described in the acquiring company’s Privacy Statement.
Hemeos will not sell, lease, or rent your individualized information to any third-party without obtaining your consent. Hemeos may share compiled, aggregated, or anonymous data with third-parties; This data does not have your registration contact information so that the data cannot reasonably be identified with you. The pharmaceutical industry, universities, and healthcare organizations conduct many studies to advance medical science. We will not share your registration contact information to these groups without your consent, but will inform you of the opportunity for you to directly participate in these efforts if you are eligible based off the information you have provided.
You may withdraw your consent to participate in Research Consent Release at any time by sending a request to email@example.com. Hemeos will not include your genetic information or health related information within 30 days from the receipt of your request.
Changes to this Privacy Statement
Whenever this Privacy Statement is changed in a material way, a notice will be posted as part of this Privacy Statement. After 30 days the changes will become effective. In addition, all registrants will receive an email with notification of the changes prior to the change becoming effective.
If you have questions about this Privacy Statement, please email Hemeos at firstname.lastname@example.org, or send a letter to: Hemeos, 1133 15th Street NW, Floor 12, Washington, DC 20005.
Bone Marrow / Blood Stem Cell Donor Registration: The Website contains a registration process through which you can register to become a member of the HEMEOS registry as a potential donor. HEMEOS registration requires a user’s names, mailing addresses, telephone number, and email. We will also ask for personal health information to determine if you are a suitable candidate to be a donor. You agree that by registering to be a potential donor, you will provide accurate, up to date information about yourself and will update HEMEOS as your status changes. You agree that if any information you provide is inaccurate, not up to date, or incomplete, HEMEOS may not be able to process your application to our registry.
In addition to your information, HEMEOS will request personal contact information of your friends and family. We will only use this information to contact you in the event that we cannot reach you directly. By giving HEMEOS their information, you are confirming that they are aware and agree with you sharing their information with HEMEOS.
Medical Disclaimer: HEMEOS does not intend to provide medical advice or diagnosis on the Website. Discuss your health concerns with your doctor. In addition to the medical screening for donor workup, bone marrow donation procedures should be discussed and eligibility determined based on advice from your doctor based on your personal medical status.
HEMEOS does not claim or guarantee all information on Website is accurate or up to date. By using the Website or Service, you are accepting full responsibility for the use of the information. HEMEOS is not responsible for any damage or claim associated with the use of information found on the Website.
Termination from Access to Website: HEMEOS provides you temporary access to the Website. The content contained on this Website is owned by HEMEOS and is protected by applicable copyrights, trademarks, service marks, and/or other intellectual property rights. HEMEOS hereby expressly reserves all rights not expressly granted in the Website regarding the use of its content. Any use of the content found on the Website requires the express written permission of HEMEOS, which permission may be granted or withheld in HEMEOS’ sole discretion. Failing to receive the express written permission of HEMEOS may result in termination of access to the Website.
You hereby further agree not to: (1) falsify your identity or position within any organization; (2) engage in any activity related to the Website or Service that is illegal; (3) attempt to gain access to secure portions of the Website; or (4) post or transmit any file or computer code or program (i.e. computer virus) to damage any software or hardware. These actions may result in termination of access to the Website.
Content distribution: Content on this Website is provided for your personal, non-commercial use only and may not be downloaded, copied, reproduced, distributed, transmitted, broadcast, displayed, sold, licensed, or otherwise exploited for any other purposes whatsoever without the prior written consent of HEMEOS. In addition, you may not copy, distribute, modify, post, frame or deep link this Website, including any text, graphics, video, audio, software code, user interface design or logos featured on this Website without the prior written consent of HEMEOS. HEMEOS reserves the right to refuse permission for any reason.
The Website content is designed for users in the United States. Access to the Website or the content on the Website may not be legal by certain persons or in certain countries. If you access the Website from outside the United States, you do so at your own risk and are responsible for compliance with the laws of your jurisdiction.
Disclaimer of Warranties / Limitation of Liability: HEMEOS provides no guarantee of the availability or accuracy of the Website. HEMEOS does not guarantee the Website will be free of viruses or other harmful features, and is not liable for any damage to your computer from using the Website. HEMEOS does not provide any warranties of the Website and its content for any use or purpose. You agree by using the Website that you do so at your own risk. Under no circumstances, including but not limited to negligence, breach of contract, or tort will HEMEOS be liable for any damages that arise out of your use of the Website.
You agree to defend, indemnify and hold harmless HEMEOS, its affiliates, agents, officers, employees, partners and licensors from and against any claim, suit, demand or action, and any and all direct losses suffered or incurred by HEMEOS, including reasonable attorneys' fees, in connection with any claims due to, or arising out of, your use of the Website or Service, including your application to become a potential bone marrow or blood stem cell donor.
By entering my full name (First Middle Last) into the field below, I acknowledge that I have read, understand and agree with the above. I understand that my typewritten name in this field constitutes my electronic signature.