Privacy Notice

Who We Are

Alnylam Pharmaceuticals, Inc. is the sponsor of the studies referred to on this website and has hired the external provider KPI to support trial recruitment activities.

KPI Agency Inc. gathers and processes your personal information at the request of Alnylam Pharmaceuticals Inc., in accordance with this privacy notice and with the relevant data protection regulations and laws. This notice provides you with the necessary information regarding your rights and our obligations, and explains how, why and when we process your personal data.

EU General Data Protection Regulation (GDPR) Information

Alnylam Pharmaceuticals Inc. is the controller of the personal data collected with registered office at:
675 West Kendall St
Cambridge, MA 02142, USA

KPI Agency’s registered office is at
302 Washington St #150-7038
San Diego, CA 92103, USA

KPI Agency will act as a data processor, meaning it is only responsible for processing the personal data it receives on behalf of Alnylam. After receiving information, KPI Agency transfers it to Alnylam the clinical trial sponsor.

KPI Agency is certified compliant with the E.U. – U.S. Privacy Shield Framework and with the Privacy Protection Principles therein. Click to learn more. Complaints can be filed via the Independent Recourse Mechanism the Better Business Bureau at

Our designated Data Protection Officer/Appointed Person is Chad Childress, who can be contacted at

Alnylam’s Data Protection Officer, Arianna Sekeri, can be reached at email address

Information That We Collect

KPI Agency processes your personal information to provide you with this pre-screening service. We will never collect any unnecessary personal data from you and do not process your information in any way, other than as specified in this document. We may collect information about your visit on a de-identified, aggregate basis. This information may include the time and length of your visit, the pages you looked at on our site, and the site you visited just before coming to ours. We may also record the name of your Internet service provider. We only use this information to measure site activity and to develop ideas for improving our site.

We are also asking you to fill out a form for a potential study opportunity. Submitting this information is optional, and we collect it so that approved, GDPR & HIPAA-compliant study staff members can follow up on your inquiry .

The personal data that we may collect includes:

  • Name
  • Age, Age range
  • Home Address
  • Personal Email
  • Business Email
  • Home Telephone Number
  • Mobile Telephone Number
  • Interest in Future Studies
  • Health/Medical Information

We collect information in the following ways:

From Our Web Analytics, Online Forms, website cookies, Via Phone Call and Text

How We Use Your Personal Data

KPI Agency and Alnylam takes your privacy very seriously and will never disclose, share or sell your data without your consent; unless required to do so by law. We only retain your data for as long as is necessary and for the purpose(s) specified in this document.

The purposes and reasons for processing your personal data are detailed below:

  • We collect your personal data for study and trial qualification
  • We collect and store your personal data as you expressed interest in participating in a study or trial for a limited number of ten (10) years as indicated in this document.
  • We collect and store your personal data as you expressed interest in obtaining Alnylam corporate information or disease awareness information.

Your Rights

For Eu residents and residents of the following countries: Japan, Canada, Argentina, Israel, New Zealand, Switzerland, Uruguay, UK
You have the right to access any personal information that KPI Agency processes about you and to request information about:

  • What personal data we hold about you
  • The purposes of the processing
  • The categories of personal data concerned
  • The recipients to whom the personal data has/will be disclosed
  • How long we intend to store your personal data
  • If we did not collect the data directly from you, information about the source

If you believe that we hold any incomplete or inaccurate data about you, you have the right to ask us to correct and/or complete the information and we will strive to do so as quickly as possible; unless there is a valid reason for not doing so, at which point you will be notified.

You also have the right to request erasure of your personal data or to restrict processing (where applicable) in accordance with the data protection laws; Where applicable, you have the right to obtain a free copy of your personal data (“data portability” of your information) and the right to be informed about any automated decision-making we may use.

For residents of other countries:
You may withdraw your consent for us to use the personal data shared in the form at any time by writing to the KPI Privacy Office and in such case we will stop using your data and delete it.

These requests can be made via email:

Or by mail: KPI Agency, 302 Washington St #150-7038
San Diego, CA 92103, USA

If we receive a request from you to exercise any of the above rights, we may ask you to verify your identity before acting on the request; this is to ensure that your data is protected and kept secure.

You may also at any time lodge a complaint in front of the relevant data protection authority if you are a European resident. A list with the Supervisory Authorities in Europe and their respective contact details is available here:

Sharing and Disclosing Your Personal Information

We do not share or disclose any of your personal information without your consent, other than for the purposes specified in this consent form or where there is a legal requirement. KPI Agency uses third-parties to provide the below services and business functions; however, all processors acting on our behalf only process your data in accordance with instructions from us and comply fully with this consent form conditions, the data protection laws accordance with Article 28 GDPR and any other appropriate confidentiality and security measures

Safeguarding Measures

KPI Agency takes your privacy seriously and takes every reasonable measure and precaution to protect and secure your personal data. We work hard to protect you and your information from unauthorized access, alteration, disclosure or destruction and have several layers of security measures in place, including: – SSL, TLS, encryption, pseudonymization, restricted access, two factor authentication, firewalls, anti-virus/malware

Transfers Outside the EU (EU residents only in compliance with GDPR)

KPI Agency utilize some products or services (or parts of them) that may be hosted/stored in non-EU countries, which means that we may transfer any information which is submitted by you through the website outside the European Economic Area (“EEA”), but always in accordance with data protection law and subject to strict safeguards. For example, we work with third parties to use their software platforms who have servers outside the UK or EEA to send communication emails to our users.

Consequences of Not Providing Your Data

You are not obligated to provide your personal information to KPI Agency, however, as this information is required for study and trial qualification, we will not be able to offer some/all our services without it.

How Long We Keep Your Data

KPI Agency and Alnylam only ever retain personal information for as long as is necessary (about 10 years) and we have strict review and retention policies in place to meet these obligations.

Contact Us

For any questions or withdrawing consent, you can contact us by sending an email to