ResearchMatch.org

No, not an online dating service … ResearchMatch is an NCRR-funded secure registry that allows individuals to sign up to receive alerts about clinical research in which they might be interested and for which they might be eligible — and researchers to sign up to find potentially eligible participants for their studies.

Currently, 40 of the 46 current CTSA sites are participating, and the registry will eventually expand to include non-CTSA institutions. As described in the NIH’s news release:

After an individual has self-registered to become a volunteer, ResearchMatch’s security features ensure that personal information is protected until volunteers authorize the release of their contact information to a specific study that may be of interest to them. Volunteers are notified electronically when they are a possible match and then make the decision regarding the release of their contact information. It also will promote choice as there are no obligations on the volunteer to participate in studies.

According to the ResearchMatch.org participant FAQ, “[approved] researchers will not be given access to begin looking for potential study Volunteers through ResearchMatch until approximately January 2010.” As further explained by the researcher FAQ:

ResearchMatch is a not-for-profit activity and is free for any participating site & their researchers. … Researchers at participating sites will be given access to register through the ResearchMatch system. Upon registration, researchers may request either feasibility or recruitment access … your access to recruit via ResearchMatch will last only as long as your IRB-study approval.

After you have been granted recruitment access, you will be able to search for appropriate matches amongst the non-identifiable ResearchMatch Volunteer profiles in the system. You will enter your study’s criteria in the ResearchMatch Search Builder which will yield a list of these potential matches. You will send out IRB-approved content in your initial recruitment message to these potential matches through ResearchMatch. The secure ResearchMatch clearinghouse will route your message to each of these potential matches and they will have the option of replying yes, no, or no response. Your study’s home page will feature all those Volunteers who say yes and show aggregate figures/charts demonstrating the response rate to your initial recruitment message. Once the Volunteer has authorized ResearchMatch to release their contact information to you, you will be responsible for managing this contact information as called for by your IRB-study protocol.

Vanderbilt, which maintains and whose IRB oversees ResearchMatch.org, also has its own DNA bank called BioVu, which includes leftover blood from all patients seeking treatment unless they opt out when signing the the Vanderbilt Consent for Treatment and Agreement to Pay form.

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9 Comments »

  1. D said

    Great Idea from NCRR. I wonder if it will work.

    I am a little troubled by the last note about BioVu. An opt-out option on an agreement to pay form seems a little creepy. Seems more like something on a rip off “free” vitamin website. And the statement that…law enforcement agencies will not be able to get information about a specific person’s DNA…doesn’t ring true. If they can match the code to your medical records and the police come by with a subpoena how can they not give it to them? But then the cops have other ways of getting a DNA sample.

  2. writedit said

    The record of the DNA is de-identified, with no linkage file kept. The only phenotype data for each sample are those available at the time the record is created – no recontact for additional information or follow-up is possible (quick overview available here). They actually insert fake data (names, dates, etc.) to make the records easier to read. Now, of course the DNA itself is another matter. The opt-out rate is quite low, about 3-5%.

    • D said

      That description certainly makes it clearer. I wonder though if you have several genotyped blood samples/records in the bank, (and therefore matched as identical) if you could compare those and somehow figure out who the patient is? I have seen too many “impossible to break codes” broken with a little curiosity and imagination.

      • D said

        To be clear, I meant if a single person has had several blood draws over the years that could be matched as identical based on genotype data.

  3. whimple said

    People worry about this kind of thing too much. I run a completely identified study where people grant us access to all their past and future medical information and our opt-out rate is 1% from more than 200 enrollees. The advantage is that our study is much more powerful since we can follow patient outcomes. People going to the bother of doing human subjects research should go full-monty or not at all.

    • whimple said

      or more correctly phrased, our opt-in rate is 99% since the default is “out”.

      • D said

        whimple, I prefer your opt-in strategy. Again, it just feels a little less “web scam” rip-off-like.

  4. [...] coverage of a recent workshop on the future of the semantic web for scientific communication. In this article there is a look at an organisation which matches researchers with research [...]

  5. [...] coverage of a recent workshop on the future of the semantic web for scientific communication. In this article there is a look at an organisation which matches researchers with research [...]

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