ALSP Registry Privacy Notice
We keep our Privacy Notice under regular review, and will make any new versions available on the ALSP Registry app. It was last updated on November 22, 2021.
In this Privacy Notice we talk about ‘you’. When we say ‘you’, we mean all people taking part in the study. This includes adults with ALSP, their caregivers/proxy, and CSF1R mutation carriers.
The ALSP Registry study
Welcome to the ALSP Registry study.
This is a research study about adult-onset leukoencephalopathy with axonal spheroids and pigmented glia (ALSP).
We are trying to learn more about ALSP, so we can help improve the lives of people affected by the condition.
Who is running the study?
We are Vitaccess Limited (Vitaccess), a UK-based research company. We are running this study sponsored by Vigil Neuroscience, Inc. (Vigil), a biotechnology company based in the United States. Vitaccess acts as a processor for data collected on behalf of Vigil.
Vitaccess acts as a data controller for some of the data collected via the ALSP Registry app. We are the data controller for any data that we collect for our own reasons, which includes statistics data related to the survey responses, analytics collected from the application, and other tracking related information that in each case is anonymized and contains no personably identifiable information. For more details, see the ‘Why is my data being collected?’ section of this notice.
Why is my data being collected?
We collect your data to run the study:
to find out more about ALSP and the impact it has on people who have it and their caregivers.
for study admin, like creating an account for you and contacting you about the study.
We might also use your data for other reasons:
to track your use of the ALSP Registry app, to check it is being used properly, or to look after the ALSP Registry app and our systems.
To see how people use the ALSP Registry app so we can make it easier to use, and to help us design studies like this in the future.
To help protect or act on Vigil’s or our legal rights, or to follow the law.
What data is collected?
We collect personal data about you, which may include:
any other personal data you may provide to us during your time in the study.
We may also collect sensitive data about your:
ethnicity. This helps us to learn how ethnicity might affect ALSP.
health and ALSP data. This might include data about your ALSP symptoms, its treatment, and its impact on your life and wellbeing.
How will my data be collected?
We collect your data when you use the ALSP Registry app.
We collect data that you enter directly, or a caregiver/proxy enters on your behalf. This includes data you enter when you register for the study, or take part by filling in your surveys.
We may also collect data about you that you do not enter directly. This includes data about how you use the ALSP Registry app, like how long it takes you to fill in surveys, or whether you miss out any questions. We use the data to make the ALSP Registry app easier to use.
How will my data be stored and kept secure?
We keep your data secure and private. Before we share data with Vigil, we will separate the data we use for research from data that could identify you. This means that nobody looking at the research data can easily work out who you are.
In exceptional circumstances we may use a key to link the data back together to re-identify you. We might do this if we spot a health risk in your data and need to contact you about it.
We will not use your name, or other data that could identify you, in presentations or reports. However, we may publish grouped, anonymized data from the study.
We will keep your data for the duration of the study. We might also keep records about you after the study:
for our or Vigil’s record-keeping, including to protect or act on our legal rights, or to follow the law.
to help improve the ALSP Registry app for future research.
Once we no longer need your data for the reasons we have described, we will delete it.
If you leave or we remove you from the study, we won’t collect any new data about you, but we will keep the data that we have already collected. If you would like us to delete your data, please contact us.
Who will have access to my data?
We might share your data with other people or entities (listed in the table below). We might also move it to a country with different data protection rules to where you live. We will make sure your data is always protected to standards like those in the UK.
We might share your data with the following people and organizations:
What are the lawful reasons for collecting my data?
In line with data protection law, we must have lawful reasons for collecting and using your data. These are:
your consent. When you register for the study, we ask for consent from you or your caregiver, on Vigil’s behalf, to use your data for the study. We only use your data for the study if we receive consent. If you decide to withdraw consent and would like us to delete your data, please contact us. This will not affect your ALSP care.
we have a legitimate interest. We might have legitimate reasons for using your data on behalf of Vigil. These include study admin, tracking proper use of the ALSP Registry app, and protecting Vigil’s legal rights. We might also have our own legitimate business reasons for using your data. These include looking after the ALSP Registry app and our systems, and protecting our own rights.
we have a legal obligation. In some circumstances we might need to collect or share your data to follow the law or to help Vigil follow it.
What are my rights?
Data protection law gives you rights about your data:
your right to access. You can ask us for copies of your data.
your right to rectification. You can ask us to correct data you think is not right. You also have the right to ask us to complete data you think is incomplete.
your right to erasure. You can ask us to delete your data.
your right to restriction of processing. You can ask us to limit how we use your data.
your right to object to processing. You can object to us using your data.
your right to data portability. You can ask us to send your data to you or someone else in a format that is readable in a different system.
How can I get in contact?
If you have any questions about the study, contact Vitaccess:
The Oxford Science Park
Robert Robinson Avenue
+44 (0) 1865 818 983
For questions about our use of your data, please contact our Data Protection Officer: email@example.com
If you have questions about your rights, or to use them, contact Vigil:
Vigil Neuroscience, Inc.
300 Technology Square, 8th Floor
Cambridge, MA 02139
How can I make a complaint?
You can complain to your local data protection authority if you are unhappy with how we have used your data:
Centralized Case Management Operations
U.S. Department of Health and Human Services
200 Independence Avenue, S.W.
Room 509F HHH Building
Washington, D.C. 20201