Step 7.
Promote Your Registry

7.0 Overview

Let researchers know your registry exists—if they do not know about it, they will not use it. Continue to prioritize data stewardship and your registry participants’ privacy by entering into data use agreements with registry end users that establish permitted uses of the data.

7.1 Find Your Research Audience

The strategy for reaching your target audience will depend on your registry’s rare disease and on the status of the research focused on this disease.

To find academic and commercial researchers:

  • Review biomedical company portfolios to learn about their focus areas.
  • Attend conferences and meetings that target rare diseases in general or your specific rare disease in particular.
  • Partner with related rare disease organizations.
  • Explore these online resources:
    • PubMed: A free search engine that primarily accesses the MEDLINE database of references and abstracts on life sciences and biomedical topics; the United States National Library of Medicine at the National Institutes of Health (NIH) maintains the database.
    • ClinicalTrials.gov: The largest clinical trials database holding registrations from more than 230,000 trials from 195 countries; it is managed by the United States National Library of Medicine at NIH.
    • NIH RePORTer: Research Portfolio Online Reporting Tools provides access to reports, data, and analyses of NIH research activities, including information on NIH expenditures and the results of NIH supported research.
    • GARD Guide – How to Find a Disease Specialist: The Genetic and Rare Diseases Information Center (GARD), a program of the National Center for Advancing Translational Sciences (NCATS), provides tips for finding researchers and healthcare professionals with expertise in a particular rare disease.

7.2 Choose Methods for Promoting Your Registry

Find researchers who are studying your registry’s rare disease and reach out to them to discuss ways that your registry can support their research projects.

Consider these suggestions for promoting your registry from FasterCures, “Expanding the Science of Patient Input: Building Smarter Patient Registries.”

  • Publish periodic data summaries.
  • Promote and advertise the ability for end users to direct queries or surveys.
  • Exhibit at professional society/trade conferences and demonstrate the availability of registry data.
  • Contract with external researchers to conduct studies that you and your participants consider important.
  • Issue funding opportunities (if financially feasible) for projects that use registry data.
  • Post data sets on open research platforms.
  • Issue data challenges or prizes to stimulate data analysis.

Refer to the Resources section of this step to learn about other resources that discuss methods for promoting your registry.

7.3 Manage Data Requests

To access your registry’s data, researchers will need to request permission to acquire the data. Provide a means for these potential end users to contact you (via email, your website, social media, or other means). Before you grant this access, determine how you will:

  • Control the type of data provided to end users
  • Manage requests for the data
  • Prioritize data security and participant privacy

Create a data management plan to address the process for receiving data requests:

  • How will researchers make their requests?
  • Who will respond to data requests and answer any data-related questions?
  • In what format will researchers receive data?
  • Will researchers be able to contact registry participants anonymously via surveys, or only access data you have already collected?
  • How will you ensure the data are used responsibly?

Draft a data user agreement (DUA), which must be entered into before any data is used or disclosed. The DUA should include, at minimum, the following:

  • Permitted uses and disclosures of the limited data set
  • Who may use or receive the information
  • Statement of no use or further disclosure of the information other than as permitted by the agreement or as otherwise permitted by law
  • Use of appropriate safeguards to prevent an unauthorized use or disclosure
  • Reporting any use or disclosure of the data not allowed by the agreement
  • Understanding that registry participants will not be identified or contacted

Let researchers know your registry exists—if they do not know about it, they will not use it. Continue to prioritize data stewardship and your registry participants’ privacy by entering into data use agreements with registry end users that establish permitted uses of the data.

The strategy for reaching your target audience will depend on your registry’s rare disease and on the status of the research focused on this disease.

To find academic and commercial researchers:

  • Review biomedical company portfolios to learn about their focus areas.
  • Attend conferences and meetings that target rare diseases in general or your specific rare disease in particular.
  • Partner with related rare disease organizations.
  • Explore these online resources:
    • PubMed: A free search engine that primarily accesses the MEDLINE database of references and abstracts on life sciences and biomedical topics; the United States National Library of Medicine at the National Institutes of Health (NIH) maintains the database.
    • ClinicalTrials.gov: The largest clinical trials database holding registrations from more than 230,000 trials from 195 countries; it is managed by the United States National Library of Medicine at NIH.
    • NIH RePORTer: Research Portfolio Online Reporting Tools provides access to reports, data, and analyses of NIH research activities, including information on NIH expenditures and the results of NIH supported research.
    • GARD Guide – How to Find a Disease Specialist: The Genetic and Rare Diseases Information Center (GARD), a program of the National Center for Advancing Translational Sciences (NCATS), provides tips for finding researchers and healthcare professionals with expertise in a particular rare disease.

Find researchers who are studying your registry’s rare disease and reach out to them to discuss ways that your registry can support their research projects.

Consider these suggestions for promoting your registry from FasterCures, “Expanding the Science of Patient Input: Building Smarter Patient Registries.”

  • Publish periodic data summaries.
  • Promote and advertise the ability for end users to direct queries or surveys.
  • Exhibit at professional society/trade conferences and demonstrate the availability of registry data.
  • Contract with external researchers to conduct studies that you and your participants consider important.
  • Issue funding opportunities (if financially feasible) for projects that use registry data.
  • Post data sets on open research platforms.
  • Issue data challenges or prizes to stimulate data analysis.

Refer to the Resources section of this step to learn about other resources that discuss methods for promoting your registry.

To access your registry’s data, researchers will need to request permission to acquire the data. Provide a means for these potential end users to contact you (via email, your website, social media, or other means). Before you grant this access, determine how you will:

  • Control the type of data provided to end users
  • Manage requests for the data
  • Prioritize data security and participant privacy

Create a data management plan to address the process for receiving data requests:

  • How will researchers make their requests?
  • Who will respond to data requests and answer any data-related questions?
  • In what format will researchers receive data?
  • Will researchers be able to contact registry participants anonymously via surveys, or only access data you have already collected?
  • How will you ensure the data are used responsibly?

Draft a data user agreement (DUA), which must be entered into before any data is used or disclosed. The DUA should include, at minimum, the following:

  • Permitted uses and disclosures of the limited data set
  • Who may use or receive the information
  • Statement of no use or further disclosure of the information other than as permitted by the agreement or as otherwise permitted by law
  • Use of appropriate safeguards to prevent an unauthorized use or disclosure
  • Reporting any use or disclosure of the data not allowed by the agreement
  • Understanding that registry participants will not be identified or contacted

Continue to Step 8. Review & Evolve Your Registry after you finish Step 7