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Privacy Policy

ASH Research Collaborative Website Privacy Policy

Last Modified:

November 14, 2018

Introduction:

The ASH Research Collaborative (ASH RC) was established by the American Society of Hematology (ASH) in 2018 to foster collaborative partnerships to accelerate progress in hematology, with the goal of improving the lives of people affected by blood diseases. The foundation of the ASH RC is its Data Hub, a technology platform that facilitates the exchange of information by aggregating in one place, and making available for inquiry, research-grade data on hematologic diseases. The ASH Research Collaborative (ASH RC) Data Hub was created to facilitate the sharing of data on hematologic conditions in support of scientific inquiry and discovery.

The ASH Research Collaborative (ASH RC) was established by the American Society of Hematology (ASH) in 2018 to foster collaborative partnerships to accelerate progress in hematology, with the goal of improving the lives of people affected by blood diseases. The foundation of the ASH RC is its Data Hub, a technology platform that facilitates the exchange of information by aggregating in one place, and making available for inquiry, research-grade data on hematologic diseases. The ASH Research Collaborative (ASH RC) Data Hub was created to facilitate the sharing of data on hematologic conditions in support of scientific inquiry and discovery.

The Purpose of This Website and Associated Data Collection:

The first research initiative of ASH RC is a Sickle Cell Disease (SCD) Clinical Trials Network (CTN), which will launch in 2019 to optimize the conduct of clinical trials research in SCD. The SCD CTN will leverage the Data Hub to collect key information and identify gaps that will help advance SCD research and treatment.

This website located at www.ashresearchcollaborative.com (“Web Site”) was created solely for the submission of Letters of Intent (LOI) from interested institutions that seek to participate in SCD CTN. The LOIs will be evaluated based on demonstration of their ability to enroll patients into trials, as well as their scientific leadership in the design and conduct of clinical trials in sickle cell disease. Second, based on the LOI, ASH RC will select qualified institutions and invite them to submit a full RFP, which will be issued in the Spring of 2019. Lastly, following RFP review, the selected sites will be subject to a site visit prior to admittance into SCD CTN.

Overview and Limited Scope of Privacy Policy:

This Privacy Policy only applies to the submission of letters of intent by interested institutions and the information of the individuals contained in those submissions. The scope of this Privacy Policy is limited to these submissions only. This Privacy Policy describes the types of information ASH RC collects, how ASH RC uses the information to evaluate prospective participants in the SCD CTN. We also describe the measures we take to protect the security of the information and how you can contact us about our privacy practices.

Information Collection By ASH RC:

As a prospective applicant ASH RC asks you to submit an indication of intent to respond that includes the following information:  

Your Name, Address, Telephone Number

The Names of other Key Personnel that may participate in the CTN

Name of Participating Institutions for SCD CTN

Details concerning your institutional experience and work history in the areas of relevant clinical research

Details and descriptions concerning your experience in treating the sickle cell patient community

Non-identifiable Information concerning the patient population and associated demographic information relevant to your experience

Curriculum Vitae Information from participating personnel

Eligible Institutions in the United States:

Institutions may submit (an) application(s) if they have any of the following characteristics:

  • For-profit organizations
  • Non-profit organizations
  • Public or private institutions, such as universities, colleges, hospitals, and laboratories
  • Eligible agencies of the Federal government
  • Community-based and Faith-based Organizations

Eligible institutions must be US based and ASH RC at this time is only accepting submissions from US based institutions.

Automated Information Collection on the Web Site:

We also collect certain information by automated means. For example, we collect information that is sent to us automatically by your Web browser when you visit this Web Site. This information typically includes your IP address, the identity of your Internet service provider, the name and version of your operating system, the name and version of your browser, the date and time of your visit, the pages you visit, your location and your mobile device unique identifier. ASH RC also uses "cookies" and other Web technologies to collect information and support certain features of our Web Site. For example, we may use these technologies to collect information about the ways visitors use this Site—which pages they visit, which links they use, and how long they stay on each page. The information we collect from your Web browser and from cookies and other Web technologies does not identify you personally but in some cases we may link it to personally identifiable information.

Data Protection and Data Security:

ASH RC maintains reasonable and appropriate measures to protect personal information from loss, misuse and unauthorized access, disclosures, alterations and destruction taking in to account the risk involved in the processing and the nature of personal information. Unfortunately, no site, server or database is completely secure or "hacker proof." We therefore cannot guarantee that information about you will not be disclosed, misused or lost by accident or by the unauthorized acts of others.

Updates to this Privacy Policy:

We reserve the right to update it periodically to reflect changes in those policies and practices. When we do, we will provide notice to you in accordance with any legal obligation to do so and post the revised version behind the link marked "Privacy Policy" at the bottom of each page of our Web Site. We will also indicate at the top of the policy when it was most recently updated.

How To Contact Us:

For more questions regarding this Privacy Policy, please contact ASH RC CTN Staff at SCD-CTN@ashresearchcollaborative.org.