Privacy Notice – Prospective Clinical Trial Participants in Australia, New Zealand and the USA
Insmed Incorporated (“Insmed”) is a sponsor of clinical trials around the world, including in the United States, Australia and New Zealand. Insmed has engaged VitalTrax, LLC doing business as PatientWing (“PatientWing”, “we”, “us”, “our” and similar expressions) to run the recruitment process for Insmed’s clinical trials in these jurisdictions on Insmed’s behalf including to provide initial information about clinical trials that Insmed is sponsoring and for which PatientWing is looking for participants. This is done through PatientWing’s proprietary online platform.
This Privacy Notice sets out how PatientWing collects, stores, uses and discloses Personal Data through the PatientWing community engagement and study enrollment pre-screening website, at www.patientwing.com
and other web domains that link to this Privacy Notice (the "Website
Through the Website, you can register your interest in being a potential participant in these clinical trials. Comprehensive information about the clinical trials will be provided to you by healthcare professionals if you are eligible to participate in the clinical trials based on the Personal Data you provide us.
If you have any questions about our collection of your Personal Data (as defined below), please contact us at firstname.lastname@example.org
Access to and use of the Website are not intended for use by anyone younger than the age of 18 and we do not knowingly collect Personal Data from individuals younger than the age of 18. We take the protection of data privacy very seriously.
Please read this Privacy Notice thoroughly. If you disagree with the way Personal Data will be used, please do not use this Website or provide your Personal Data through the Website.
1. Purpose of Personal Data collection
The main purpose
for the collection of Personal Data through the Website is to determine if you are eligible to participate in an advertised clinical trial and, if so, to share your Personal Data with Insmed and the healthcare professionals (investigators and members of the study team) involved in conducting that clinical trial. We will assess the Personal Data you provide to determine whether you are eligible for the clinical trial in which you express interest or another, as described further in Section 3 below.
2. What Personal Data do we collect and process?
Except as modified by Sections 11 or 12 “Personal Data
” for purposes of this Privacy Notice means any information relating to an identified or identifiable natural person (i.e. living individual), including health information. For the purposes of this Privacy Notice, Personal Data is limited to information about you that is collected through the Website.
We collect the following Personal Data through the Website:
(a) Your Personal Details
We collect certain personal details such as your name, age range, sex, location, email address and telephone number.
(b) Your Health Information
We collect details about your health and any conditions you may have, as well as details of clinical trials you have participated in in the past. We also collect your date of birth so we can determine if you are in the age range eligible for participation in particular clinical trials.
(c) Browsing Information
3. How do we use your Personal Data?
We use the Personal Data we collect to determine whether you are eligible to participate in clinical trials sponsored by Insmed. We may use automated analysis tools to look at the eligibility requirements of the particular clinical trial you have expressed interest in and the Personal Data and other information you have provided, to make the determination. If our analysis shows that you are ineligible for a trial in which you expressed interest or are eligible for a trial in which you did not specifically express interest, we may use the Personal Data that you provide to contact you to ask if you would like to see if you are eligible for a different trial.
If you initially are determined to be ineligible for a particular clinical trial, and you provide your consent to be contacted about that same trial during its enrollment period, we may use your Personal Data to contact you by telephone, sms/text or email periodically, until enrollment in the clinical trial has completed, to re-assess your eligibility. You may unsubscribe from such communications at any time by contacting email@example.com
In addition, and again only if you have provided your consent, we will also use your Personal Data to determine whether you are eligible for any other or future clinical trials we conduct in which you have not specifically expressed interest. If you provide this consent, we may contact you by telephone, sms/text or email about other or future clinical trials in order to provide you with relevant information about such trials. You may unsubscribe from receiving this information about other or future clinical trials at any time by contacting firstname.lastname@example.org
(a) We may also use your Personal Data where it is necessary for us to comply with any legal obligations
to which we are subject, to exercise our legal rights or to protect ourselves or any other person when reasonably required.
(b) In order to meet our contractual security obligations to Insmed, PatientWing also collects data (including Personal Data) for website security and maintenance purposes
but we use such data in statistical and anonymized form as far as possible. We do not use your health information for this purpose.
(c) In order to meet our contractual services obligations to Insmed, PatientWing also may use your Personal Data for purposes of contacting you about your use of the Websites and to respond to your communications and requests
. If you enroll in a clinical trial and expressly consent to receiving study information and messages, PatientWing will provide you with appointment reminders, study instructions, and other important study instructions. In addition, PatientWing may exchange relevant health information with the study doctor and staff in order to provide these services.
Please note that where you have given your consent to any use of your Personal Data, you can withdraw or revoke this consent at any time by contacting email@example.com
. Please note that if you withdraw your consent to any use of your Personal Data we may not be able to continue to provide you with our services, including participating in any current or future clinical trials.
4. With whom do we share Personal Data?
Where you are considered to be eligible for one of our trials, we may share your Personal Data with Insmed and the relevant third-party healthcare professionals (investigator or members of the investigations team) who are carrying out that clinical trial. We may also share your Personal Data with a clinical research organization (CRO) that provides support in conducting the trial.
In such cases, when we share your Personal Data with these healthcare professionals and CRO, they will provide you with information about the relevant clinical trial, together with an informed consent form, which describes in detail the trial and its purpose and procedures, including a privacy notice for that particular trial stating how your Personal Data will be collected, used and disclosed for purposes of the trial.
We may also share your Personal Data to the fullest extent permitted by law with:
(a) Law enforcement agencies, courts, regulators, government authorities or any other third parties where this is necessary to comply with a legal or regulatory obligation, or necessary to protect our rights or those of a third party.
(b) Successors to our business. We may share your Personal Data with any third party that purchases, or to which we transfer, all or substantially all of our assets and business, or that enters into a strategic business relationship with us relating to investigational products that are the subject of our clinical trials. Should such a sale, transfer or strategic relationship occur, we will use reasonable efforts to try to ensure that the entity to which we transfer your Personal Data uses it in a manner consistent with this Privacy Notice. 5. Who is processing the Personal Data?
As mentioned at the beginning of this Privacy Notice, the services and information provided though this Website are provided by PatientWing, a clinical study recruitment company. PatientWing is a system for the purpose of supplying and administering the Websites platform and the associated collection and processing of your Personal Data. PatientWing may in turn engage subcontractors, for example to provide hosting of the Websites and data storage. Any processing of the Personal Data by PatientWing or these third party subcontractors is ultimately in accordance with Insmed’s instructions.
We may also engage call center service providers to help us contact you about the running of the clinical trial.
Where the services of such third parties are required for assistance with the technical maintenance, administration or other processing of data are required, the Personal Data will be accessed by these parties to ensure a smooth and secure technical handling of the Website and in compliance with applicable law, including with respect to data confidentiality, privacy and security. You can obtain a list of the contractors engaged to assist PatientWing who may have access to Personal Data by contacting PatientWing at firstname.lastname@example.org
6. Retention of Personal Data
Personal Data will be stored by us for as long as is necessary to provide our services to you and in accordance with applicable data retention requirements imposed by law and our corporate policies. When determining how long to retain your Personal Data, we comply with legal obligations imposed by applicable privacy and data protections laws and also take into account relevant regulators' expectations. We ensure that Personal Data which is no longer needed by us or which can no longer be used for a permitted purpose is de-identified or destroyed in a secure manner.
7. Data Security
We use a variety of methods, such as firewalls, encryption technologies, intrusion detection software and manual security procedures that reflect industry standards, to secure your data against loss or damage and to help protect the accuracy and security of Personal Data and to prevent unauthorized access or improper use. In particular, whenever you are sending Personal Data to us through the Website, your Personal Data (including your health information) is protected by Secure Sockets Layer (SSL) technology. We also restrict the access of our employees or contractors to your Personal Data on a need to know basis, with different levels of access authorizations and we keep a record of access logs.
However, please note that no Internet or Wi-Fi transmission can ever be guaranteed to be 100% secure and so we encourage you to take care when disclosing Personal Data online and to use readily available tools, such as Internet firewalls, anti-virus and anti-spyware software and similar technologies to protect yourself online. If you think that the Website or any Personal Data is not secure or that there has been unauthorized access to either the Website or your Personal Data, please contact email@example.com
provides information about the cookies (and any similar tracking technologies) that the Website uses. The PatientWing Cookies Notice also provides information about managing your consent to cookies when required by applicable law.
Some web browsers may be configured to send 'Do Not Track' signals to the websites that you visit. There is no consensus among industry participants as to what 'Do Not Track' means in this context. Like many websites, the Website does not alter practices when a 'Do Not Track' signal is received from a visitor's browser. To find out more about 'Do Not Track', please visit www.allaboutdnt.com.
We use the following types of cookies:
You can find more information about the individual cookies we use and the purposes for which we use them below.Cookies created by PatientWing
This website will set some cookies that are essential for the website to operate correctly. These cookies, none of which capture personally identifiable information, are as follows:
• Visitor ID
– this cookie is a numeric value that identifies unique visitors and provides coherence and consistency to a site visit;
• Page Number –
this cookie identifies the page you are on;
• Session ID
– this cookie identifies your website session;
– this cookie checks whether or not your browser supports cookies;
Our websites will set several types of third-party cookies. The third-party cookies which may be set include:
• Google Analytics
. For further information about the collection and use of data through Google Analytics, see http://www.google.com/policies/privacy/partners/http://www.google.com/policies/
. Google offers the ability to opt out from tracking through Google Analytics cookies; to learn about this, visit: http://tools.google.com/dlpage/gaoptout
• https://www.hotjar.com/legal/policies/privacy https://www.hotjar.com/legal/
You can block cookies by responding to our cookie popup on your browser which turns of all PatientWing and third-party cookies. However, if you block cookies (including essential cookies) you may not be able to access all or parts of our site.
9. California Residents
California Consumer Privacy Act Rights.
Under the CCPA, California residents have certain rights regarding their Personal Data. If you are a California resident and would like to exercise these rights, please contact firstname.lastname@example.org
. For your own privacy and security and as required by the CCPA, we will require you to prove your identity before we will take action on your request. It may take us some time to respond to your request, but we will do so in the manner required by the CCPA. To the extent you provide us with personal health information, the CCPA may not apply because another California statute, the California Confidentiality of Medical Information Act (CMIA), instead protects such information when collected by Insmed and its agents. We will determine which law applies and respond to your requests.
If your Personal Information is protected under the CCPA, you have specific rights, including the following:
Right to Know.
You have the right to request the following information (much of which is already provided in this Notice):
• The categories of Personal Data we have collected about you. (See “What Personal Data do we collect and process” section.)
• The categories of sources from which the Personal Data was collected. (See “What Personal Data do we collect and process” section.)
• The business purpose for collecting the Personal Data. (See “Purpose of data collection” section.)
• The categories of third parties with whom we have shared the Personal Data. (See “With whom do we share Personal Data?” section for general information about this.)
• The specific pieces of Personal Data we have collected about you. (See “What Personal Data do we collect and process” section.)
Right to Request Deletion:
Upon a verifiable request, made through one of the methods provided within the “Contact Us” section below, we will delete Personal Data we have regarding you and direct our service providers to delete your Personal Data from their records, to the extent required by the CCPA. Please note that PatientWing may be required or permitted by law to not remove (or allow removal) of your Personal Data.
Right to Be Free from Discrimination:
PatientWing will not discriminate against you for exercising any of your rights under the CCPA.
Information We May Need From You.
We may need to request specific information from you to help us confirm your identity and ensure your right to access your Personal Data (or to exercise any of your other rights). We may make this request directly if you have contacted us, or through PatientWing if that is more appropriate. Our request for information to confirm your identity is a security measure to ensure that Personal Data is not disclosed to any person who has no right to receive it. We may also contact you to ask you for further information in relation to your request to speed up our response.
Time Limit to Respond.
We will respond to all legitimate requests within forty-five (45) days, or as otherwise permitted by the CCPA.
CCPA Contact Information.
To exercise your rights under the CCPA, please contact email@example.com
10. Nevada Residents
We do not sell Covered Information as defined under Nevada law. If you would like to make a further inquiry regarding the selling of your Covered Information, as defined under Nevada law, please contact firstname.lastname@example.org
. 11. Prospective participants located in New Zealand
If you are located in New Zealand, we will collect, store, use, retain, and share your personal information (including your health information) in accordance with the requirements of the Privacy Act 2020, and the Health Information Privacy Code 2020. The information that we might collect from you, the purposes for which it may be used, how it will be stored, and with whom it may be shared, is set out in this Privacy Notice.
In addition, you have the right to request access to personal information that we hold about you, and to request that information be corrected. Any part of this Privacy Notice that is illegal, unenforceable or inconsistent with the Privacy Act 2020 may be severed from this Privacy Notice and the remaining terms or parts of the term of this Privacy Notice will continue in full force and effect. If you have any queries, concerns or complaints about the manner in which we have collected, stored, used or disclosed your personal information, or you wish to request access to or correction of Personal Data we hold about you, please contact the Privacy Officer using the details set out in Section 12 below.
We will treat your complaint confidentially and, after investigating your complaint, discuss the ways in which we can remedy the situation. We will ensure that we respond to your complaint within a reasonable time (and in any event within the time required by the Privacy Act 2020). 12. Prospective participants located in Australia.
If you are located in Australia, our collection, storage, use and disclosure of your Personal Data will be subject to this Privacy Notice, the Privacy Act 1988 (Cth) and State and Territory Health Records Acts as applicable. Any part of this Privacy Notice that is illegal, unenforceable or inconsistent with the Privacy Act 1988 (Cth) or other applicable legislation may be severed from this Privacy Notice and the remaining terms or parts of the term of this Privacy Notice will continue in full force and effect.
In addition, the following applies to you:
Anonymity and Pseudonymity.
If you are making a general enquiry only, you may deal with us on an anonymous basis or through the use of a pseudonym. However, we may not be able to provide you with any specific information if you fail to identify yourself to us. Overseas Disclosure.
You acknowledge that we may store, use, transfer and otherwise process your personal information in countries outside of Australia, including in the United States. By using our services, you consent to our transfer to, and handling or, your Personal Data in a jurisdiction which may have different privacy and data protection legislation to Australia. Secondary Purpose:
You acknowledge that we may use or disclose your Personal Data for a reason other than the purposes set forth in Section 4 (“secondary purpose
”) where the secondary purpose is connected to or associated with a purpose for collection set out in this Privacy Notice, or directly connected to or associated with a purpose for collection if the information is ‘sensitive information’ as that term is defined under the Privacy Act 1988 (Cth).
Access and Correction of Personal Data.
You have the right to request access to personal information that we hold about you, and to request that information be corrected. If you have any queries, concerns or complaints about the manner in which we have collected, stored, used or disclosed your personal information, or you wish to request access to or correction of Personal Data we hold about you, please contact the Privacy Officer using the details set out in Section 12 below We will treat your complaint confidentially and, after investigating your complaint, discuss the ways in which we can remedy the situation. We will ensure that we respond to your complaint within a reasonable time (and in any event within the time required by the Privacy Act 1988 (Cth)).
13. Notification of Changes
Should we wish to change this Privacy Notice, if you have already provided Personal Data through this Website, we will contact you to inform you of the new Privacy Notice and, in some circumstances, we may need to obtain your consent to the changes. In other circumstances, any such changes to this Privacy Notice will be promptly communicated on this page and you should check back to see whether there are any changes. If material changes are made to this Privacy Notice, we will notify you by placing a prominent notice on the Website and bringing these changes to your attention by email where reasonably possible for us to do so. We reserve the right to update and amend this Privacy Notice without prior notice to reflect legal and regulatory changes. Continued use of the Website after a change in the Privacy Notice indicates your acknowledgement of the use of Personal Data in accordance with the amended Privacy Notice.
If you wish to print this text, please click ctrl-p. 14. Further Information
directed to us in accordance with the contact details provided below.
3675 Market Street
PatientWing - Suite 200
Philadelphia, PA, 19104
ATTN: Data Protection Officer