What kind of information will I be asked to contribute?
In order to harness the power of every patient’s health story, we need to collect a few different types of information from you.
- We’ll ask you to connect your Electronic Health Records (EHRs), also known as Electronic Medical Records (EMRs), where your doctors keep their notes about medications, symptoms, treatment responses etc.
- We then supplement that information with survey data, which you’ll fill out when you create your Unite profile and occasionally thereafter. This helps us fill in any gaps from your EHRs and get a fuller picture of your story. We’ll ask about your general health and past medical history, your gender and other demographic information, family history, nutrition habits, lifestyle and exposure to environmental risk factors.
- Once you’ve provided sufficient information, we’ll send you a DNA kit to collect your saliva sample. This will allow us to sequence your genome when the right research project arises. Once your genome is sequenced, you will be able to access it in you Patient Portal.
- Lastly, we’ll ask you to contribute any health data from devices like blood pressure monitors, glucose meters, Apple Watches, and Fitbits so that we can keep your health profile up to date.
How will my privacy and personal health information be protected?
- We take patient privacy very seriously and have policies and processes in place to safeguard your identity and protect your health data. We take industry-standard physical and electronic technical precautions to protect the information that you share. We have deep cybersecurity experience on our team, and ensure that all your data is stored and managed in a HIPAA compliant manner.
- We also understand that your data is incredibly personal. Only authorized Unite team members will have access to your contact information, and this information will never be attached to the information that we share with researchers. Before sharing any information with researchers, we remove all information that identifies you directly. We require any researchers with whom we share de-identified data to contractually agree not to attempt to re-identify or contact you without your explicit consent and agreement in advance.
How will my information be used?
- We believe that open sharing of health information is how medical discoveries will happen. Through private sharing of de-identified health information you will be helping the greater medical community, including non-profit organizations, research scientists, medical investigators, regulatory agencies and life-science companies as they work to discover new treatments and cures.
- With this in mind, the information you choose to share will be combined with that of many other individuals to create discovery datasets that help researchers to get a better understanding of disease faster.
- If a trusted research partner notifies us of a clinical trial that is in need of participants, your information will also be used to evaluate whether you are likely to be eligible for enrollment. If you are likely to be eligible, we will notify you and provide information on how to contact the study coordinators.
What happens if I change my mind and don’t want to share my data?
As a patient, you own your data. You can choose to stop sharing your data at any point in time. You will be asked to opt in and choose to share your information, and you have the right to opt out at any time. That being said, we cannot recall or remove data from a dataset that has already been shared with a researcher until any agreements with the researcher or institution have been terminated. After that point, the researcher or institution will be contractually required to delete any data we have provided to them.
Will my data be shared with life sciences companies?
Yes. We will invite researchers from life science companies and other academic, commercial, and government entities to request aggregated and curated, de-identified data to accelerate their scientific efforts. Your de-identified data may be included in the resulting dataset if you meet the eligibility criteria for their scientific study; however you have the right to opt out at any time before your data is shared.
Will my data be shared with law-enforcement?
We do not provide data to law-enforcement, unless that data is subpoenaed or we are required by law to comply with the law-enforcement request.
Will researchers of life-science companies contact me directly?
No, we will not allow researchers of life-science companies to contact you directly without your prior, explicit permission and consent.
Who will have access to my information?
Through your Patient Portal, you’ll decide who has access to the information in your account. You also have the ability to grant or limit permissions in order to control who can access your information, to export your information, or terminate your account.
Does Unite track my activity when I am visiting the site?
Are pediatric patients or children able to contribute data?
A parent or legal guardian must create and manage the account on behalf of any individual under the age of 13. We do not allow children under the age of 13 to register or use our services, and we require that children between 13 and 18 have their parent or legal guardian’s consent to register or use our services. We do not knowingly collect information from children under the age of 13. If we discover that a person under 13 has registered as a user, we will terminate that person’s account.
What makes Unite Genomics different from other groups that are trying to collect data?
Whereas many companies are collecting DNA for consumer purposes, Unite is laser-focused on using data to accelerate the development of therapies and cures to rare diseases. We have a unique understanding of what information is most useful to life science researchers and a deep background in data science, which allows us to assemble datasets that best meet their needs, and support them as they work with the data. The result is more efficient research that will lead to faster discovery and shortened clinical trials.
When does Unite Genomics sequence my genome?
Your genome will not be sequenced right away. When we receive your saliva sample, we’ll place it in a secure biobank facility where it will be stored at -80° Celsius until a research project that needs your data arises. When a trusted research partner gives us their study criteria, we identify the samples that fit their needs. If you are selected for sequencing, we’ll perform 40x whole genome sequencing on your sample. We’ll notify you when this is complete and when your data becomes available. At that point, you’ll have access to download your research-grade whole genome sequence data via the Patient Portal for free.
Will Unite interpret the results of my whole-genome sequencing?
The genomic information we produce is meant for research use only and should not be used for medical decision-making, or for diagnostic or treatment purposes. Today, the complex relationship between our genetics and our health is still relatively unknown—this is the problem we’re directly working to address at Unite by enabling research. Good clinical decisions require that we take into account many factors beyond your genome including your current health, your past medical history, your family history, and others. As a result, we do not plan to produce genomic information to be used for medical decision-making.
How can I request a saliva sample kit?
Your saliva sample only becomes useful for research when we can combine it with your health data to tell your whole health story. As a result, we first collect your clinical data from your EHRs and phenotypic data from surveys before we ask for your saliva sample. Once you’ve provided enough background health data to make your genome useful to study, we’ll send you a saliva collection kit in a prepaid mailer. If you believe you have not received your saliva collection kit by mistake, feel free to contact us at any time using the button at the top of this page.
Do Patient Advocacy Groups have to pay to work with Unite?
No. We view our patient advocacy partners as our teammates in our fight to advance research. We have deep respect for the role that advocacy groups play in this field and the support that they provide for both patients and their families. We recognize that many of these groups operate in the face heavy financial constraints, so we do not expect compensation from our Patient Advocacy partners for services we offer them.
How does participation connect me to the research community?
By sharing your data, you’ll join the millions of people who are helping scientists better understand serious, life-threatening diseases. You’ll help accelerate a wide range of discoveries, including and especially, the discovery of new treatments for rare diseases.
Can I contribute suggestions for improving the patient portal?
Absolutely. We welcome your input and are committed to making the Patient Portal better. If you have comments or suggestions, please feel free to email firstname.lastname@example.org.
Can my family contribute their information?
Yes, we encourage it! Information from close relatives can shed light on the relationship between shared genomic variants and shared traits; it can be incredibly valuable in helping researchers understand the genetic factors of a disease, including disease risk, disease progression and treatment responses.
How often will I receive updates from you?
You’ll periodically hear from us when we have a new survey for you, or when we have important news or research findings that we think you may find interesting. You can, of course, opt out at any time.
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Take an active role in advancing rare disease research and accelerating progress toward life-saving treatments.