Biobank and Registry External Relations

From WikiAdvocacy

Utilizing Vendors and Partnerships

Vendor Selection

Organizations with registries and biobanks typically work with vendors. It is unlikely that you will have the expertise and equipment within your organization for all operations, and selecting a good vendor is key to your program´s success. In addition to meeting all of your technical requirements, you will want to select a vendor that will be a good partner. Below are some tips to assist you in vendor selection.

  • Learn from other advocacy organizations about their experiences
  • Interview potential vendors
  • Attend webinars and do site visits (if possible)
  • Ask if potential vendors have other advocacy organization clients
  • Talk to current and former clients
  • Understand how much will you be able to customize the system to meet your organization´s needs
  • Use tools for vendor selection in the GARB toolbox - How do I Select a Vendor?

With any vendor, it is important to determine if the vendor is willing to partner with you or is just interested in making the sale. Remember, if it´s too good to be true, it probably is.

Good Vendors, Good Partners

It’s important to emphasize that a good vendor may not be enough. Non-traditional research organizations, like advocacy organizations, need good partners. So, how can you tell if a good vendor will be a good partner?

  • Good partners understand that the business of advocacy organizations is improving the health of people, and that the endpoint is not the registry or biobank.
  • Good partners are transparent and open.
  • Good partners are flexible and responsive.
  • Good partners are visionary and creative.
  • Good partners recognize the urgency of the situation, and that the time is now.

Evaluating Potential Partnerships

In today´s world more than ever, we are encouraged to collaborate and partner with others. Partnerships can help us achieve more with less, and broaden our reach. Partnerships have amazing potential, and it´s important to evaluate each potential partnership. When approached by a potential partner, consider the following:

  • What is involved? – What is the potential partner asking of your organization? What is the outcome? What are the deliverables? What resources are involved (time, money, personnel, and organizational/personal capital)? Are roles and responsibilities clear?
  • What is the benefit? – How will both parties benefit? Can you articulate the value? What are the potential pitfalls? Is this something you can´t do/ can´t do well without the partner?
  • Is it strategic? – Do your missions align? Is this within the scope of your strategic plan? Is it a good opportunity? Does the partnership make sense?

Interacting with your Community

Have You Updated your Community about your Progress Lately?

It's important to update your community and supporters about the progress of your organization's registry or biobank. This is true if you are just beginning your research initiative or are already releasing data and samples to researchers. Regular communication helps your community stay interested and engaged in your work. There are a variety of ways to reach out to your community, including your website, newsletters, targeted email communications, direct mail campaigns, press-releases and social media. Many organizations use a combination of these techniques.

Developing a registry or biobank communication plan will help you schedule targeted, regular updates to your community. In its simplest form, the plan should include the following:

  • Target audience
  • Message
  • Communication vehicle
  • Sender
  • Timeline

You can also connect your updates to what is happening in the world by using an editorial calendar.

For more information on communication plans and non-profit marketing, visit Network for Good.

Strategies for Engaging Your Community

Communicating openly is a key strategy for a successful registry or biobank. Openness and transparency enhance the community of trust and strengthen relationships with both participants and the greater community. An engaged community is more receptive to recruitment, and engaged participants are vital for retention, as it is much more difficult to recruit new participants than to keep those that are already participating

Communication strategies to engage participants and your community include:

  • Information about the research study
  • Choices on how samples are used
  • The informed consent process
  • Timely research updates written at appropriate scientific literacy levels
  • Sharing experiences through social networking

Recruitment and Retention

Recruiting Participants for your Registry or Biobank

Recruitment is an important aspect of any registry or biobank. Without participants, it is difficult to build your resource. But where do you begin your recruitment efforts?

1. Outreach to your community

Use your organization's communication vehicles, including your website, newsletters, and email communications, to recruit participants to your registry or biobank. Many organizations dedicate a few pages of their website to their registry or biobank. Others provide regular updates through their newsletters and email communications to their community. Some organizations use only digital communications, while other use both digital and print communications. Social media is playing an increasing role in recruitment efforts.

2. Outreach to medical professionals

Announce your registry or biobank to your medical and scientific advisors. Your advisors may help recruit participants to your registry or biobank, and they will be knowledgeable if one of their patients asks a question. Also, by announcing your resource to medical professionals, you may identify individuals who are interested in studying data and samples from your collection.

3. Outreach beyond your community

If you are recruiting outside of your community, you may want to consider listing your study with an online clinical trials recruitment site, such as or CenterWatch.

4. Outreach at community events

Events provide a great opportunity to recruit participants to your registry or biobank. Many organizations recruit participants at their annual conference, support group meetings, educational meetings, walks, or other events.

Participant Retention in your Registry or Biobank

Once you´ve recruited participants to your registry or biobank, you must also have a strategy to retain them. Regular communication is an important aspect of retention. It keeps participants interested and engaged, and they will be more likely to respond to additional requests for information.

Provide timely updates to your participants about the progress of your registry or biobank. These can include updates on the number of participants enrolled, the number of research projects using the samples, or summaries of results from research projects. Targeted communications to your participants may also be appropriate (e.g. birthday or other appreciation cards).

The amount of effort and resources used for retention should be reflective of the ongoing requirements of participation. In other words, the more you ask of your participants, the greater the amount of effort you should place on retaining them. Remember, it is much easier and more fiscally responsible to retain current participants than to recruit new ones.

Interacting with Scientific Professionals

Making Researchers Aware of your Collection

In the movie, Field of Dreams, the main character hears a voice saying, “If you build it, he will come.” Unfortunately, it is not that simple with a registry or biobank. To maximize the use of your data and samples, you will need a strategy to make researchers aware of your collection. Below are some suggestions for promoting your collection to researchers.

  • Communications to medical professionals – Alert your medical and scientific advisors and professional volunteers to your collection through a special communication or through your regular communication channels. This is a great opportunity to cultivate relationships with your advisors, the medical community, and researchers.
  • Scientific meetings – Promote your collection at meetings that potential users may attend. Consider including information in a poster presentation, a podium presentation, an exhibit booth, or any society meetings you may have. Enlist help from your advisors to announce your collection to their peers in posters and presentations.
  • Professional journals, society publications, or trade magazines – Consider writing an article about your collection for the medical or research community. Each type of publication will have different requirements for articles.
  • A catalogue on your organization’s website – Post information about your collection on a section for researchers on your website. Including a catalogue will help potential users learn about the types of data and samples you have available.

Making Data and Samples Available to Researchers

Before making data and samples available to researchers, it is essential that you develop policies, sometimes known as data and sample use policies, about access to your collection. These policies should identify the types of investigators who can access the collection, as well as the process for accessing data and samples. Many organizations allow all qualified researchers to access the collection, while others may limit access to specific researchers (e.g. members of a consortium). There are many possible models, but the policy should be clear about any credentials or requirements needed to access the collection.

An application process for access to data and samples will also need to be developed. Typically, the application will include information about the researcher, their institution, how / for what purpose samples will be used, and a copy of the researcher’s IRB approval letter for the proposed research. The application should also include a lay summary of the research proposal that can be used to communicate this research to the community.

An oversight committee, sometimes known as a data or sample access committee, will review the application and determine if the researcher is eligible to receive data and/or samples. The oversight committee should include individuals who understand the research techniques being proposed, as well as representation from your organization. The oversight committee can be extremely helpful in prioritizing the use of limited samples.

Each organization will also need to determine any fee structures for data or sample use. It is also appropriate to require that researchers using data and samples acknowledge your organization in their presentations and publications.

How Do Researchers Acknowledge your Registry or Biobank?

Organizations with registries and biobanks should develop policies for how researchers acknowledge them when using their data and/or samples. When researchers who use your collection acknowledge you, it is an opportunity to make other researchers and potential collaborators aware of your collection. At a minimum, organizations should require investigators to acknowledge their registry or biobank in presentations, posters and manuscripts. In some instances, it may be appropriate to require co-authorship for data or sample access. Data/sample acknowledgement policies should be explained to investigators prior to release of data or samples, and it is also helpful to provide language and a PowerPoint slide stating exactly how your organization should be acknowledged.

We also recommend that organizations require researchers using their data and samples to provide a summary of their experimental results in lay language, as well as a copy of the manuscript. To keep this information current, many organizations contact their investigators directly to update their publication information. This can be used as an opportunity to cultivate relationships with researchers. Some organizations may also require return of information on data or sample quality, and the types of experiments conducted with specific samples.

Working with Medical and Scientific Advisors

Organizations with registries and biobanks benefit when advisors with appropriate expertise donate their time to the organizations´ research efforts. Cultivating relationships with advisors is rewarding and involves time and effort. It is helpful to ask the following three questions:

  • Who are your advisors? Advisors can be members of formal boards, committees and working groups, or individual clinicians, scientists and other professionals with an interest in your organization. It is important to identify all of your advisors, their expertise and the roles that they have within your organization. This will help you determine if you need to identify and cultivate additional advisors with other areas of expertise.
  • What do you ask of your advisors? When building relationships with your advisors, it is beneficial for everyone involved to be clear about expectations, including the time commitment. In some instances, you may want help on a project that has specific timelines and deliverables (e.g. developing a registry questionnaire in the next six months). At other times, you may want advice on a new development in the field (e.g. understanding the results of a recently published research paper or information on a new treatment). By being clear with what we are asking and when we need it, we give our advisors the opportunity to evaluate if they are able assist us. If an advisor is unable to assist, ask them for a recommendation of another advisor for the specific request.
  • When do you communicate with your advisors? It is also useful to examine your communication with your advisors. Do you interact with them regularly or do you ask for input when something comes up? Some organizations have regular meetings/ teleconferences, while others provide regular email updates of their progress. Regular communication helps your advisors stay involved and feel connected to your organization. This is also a great opportunity to acknowledge and thank your advisors.

Learn more about Advisory Boards.

Roles for Advisors

Medical and scientific advisors are important contributors to your organization’s registry or biobank. Their experience and connections can be a great asset to your program. Advisors can be involved in a variety of ways, including:

  • Helping develop the overall scientific strategy of your registry or biobank.

This includes designing the study (what data and/or samples should be collected and from whom?) and developing the questionnaire (what questions should be asked and who will complete the questionnaire?). Advisors can also help write or review protocols, including the research protocol submitted to the IRB.

  • Providing scientific oversight for your registry or biobank.

Advisors can serve on the registry or biobank oversight committee and help develop and review policies. They can also serve on the data and sample use committee to determine which investigators have access to the collection.

  • Promoting your registry or biobank.

Advisors can help promote your registry or biobank and generate awareness of your collection. They can assist with recruitment of potential participants by making information about your registry or biobank available in their practice. They can also inform other researchers about the collection. If they are users of the data and samples, they can acknowledge your organization to their scientific peers in posters and papers.

Mapping the Landscape of Your Advisors

Successful registries and biobanks utilize professional volunteers to advise them on a variety of issues. It takes time and effort to build a professional volunteer network, and an important step is to map the landscape of your advisors. This will help you identify the strengths of your current advisors in the context of the tasks where you need assistance. Below is a list of questions to begin to map the landscape of your advisors.

  • What tasks do you need assistance with?
  • What expertise do you need?
  • Who are your current advisors?
    • What is their expertise?
    • What roles do they have in your organization?
    • What other relevant roles do they have?
  • What knowledge gaps remain?

Remember, don¹t overlook organizational politics.

Networking at Scientific Meetings

Scientific meetings are great opportunities to connect with researchers and clinicians. You will be able to meet people in person that you have corresponded with by email, as well as identify potential advisors and others interested in your registry or biobank. Scientific meetings are very busy events, but with a little planning, you will have a very productive meeting.

Before the meeting

  • Review the program to identify the talks and posters you would like to attend. Poster sessions are great opportunities to have one-on-one time with the presenter.
  • Make a list of clinicians and researchers you would like to meet. Ask your advisors if they can introduce you to individuals you don't know.
  • Schedule in-person meetings with your advisors and others you have been corresponding with by email.
  • Practice your 30-second elevator speech about your organization and your registry or biobank. Practice responding to the question “How can I help?”

At the meeting

  • Attend the talks and posters you have identified. Introduce yourself to the presenter and tell them briefly about your registry or biobank. Ask them questions about their research.
  • Exchange business cards with people you meet.
  • Meet with your advisors. Take notes. Let them know where you need their help.

After the meeting

  • Follow-up with the clinicians and researchers you met at the meeting. Thank them for taking the time to speak with you and remind them of any follow-up action items you discussed.
  • Identify additional scientific meetings you would like to attend and begin planning for them. Genetic Alliance's Advocates Partnership Program offers unique networking opportunities at select scientific meetings.

Networking is an important skill to develop. For more networking tips, visit the Riley Guide.

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