Up at 5AM: The 5AM Solutions Blog

What Gets You Up at 5AM? Focus: Rare Disease Community

Posted on Thu, Jan 21, 2010 @ 01:03 PM

As part of 5AM's deeply ingrained commitment to understanding the facets of the community we seek to serve, this marks the first of a series of entries focused on learning what gets our clients, partners and the collective set of biomedical stakeholders up at 5am!

The team at 5AM was thrilled to participate in the series of meetings organized by Genetic Alliance and the NIH's Office of Rare Disease Research. The volume and diversity of people so willing to share their perspectives, ideas, operational models and concerns surrounding rare disease issues and research was simultaneously informative and inspirational. The sense of urgency, combined with considered approaches, gives birth to a vision that can drive change now and for generations to come. We appreciate that the use of registries, the exposure of biorepositories and the protocols that inform them, and the ability to associate consented data - be it patient reported such as Family Health History - or provider collected clinical, imaging or molecular data - will lead to a greater understanding of disease. We are optimistic this will ultimately provide the means to inform treatment and hopefully, cures.

After demoing our Biospecimen Locator at the Registry and Repository Boot Camp, we sat down to figure out how best to collaborate with the variety of forces - government, non-profit, commercial, and patients and their families - to move the collective, burgeoning vision forward, focusing on what can we do today. The Biospecimen Locator enables the exchange of information to facilitate research by moving specimens from the freezer to the hands of researchers.

We hope you will consider leveraging the collective work we've done with a wide variety of stakeholders as we all look to harmonize standardized common data elements, vocabulary, and open source software to facilitate research collaborations that produce results. Please take advantage of our offer to do a demo of this open source software that can be used today to simplify the visibility and exchange of biospecimens.

We would like to hear from you - please continue to share your thoughts and needs. We are consciously collaborative, and in order to support moving a collective vision forward, we need your voice and input and will offer our own. We'll be adding resource links here and will closely follow the trajectory of this space.

I'll close with one of the brilliant quotes in a breakout session from Dr. Carolyn Compton, Director of the Office of Biorepositories and Biospecimen Research, when talking about how to propel change:

  1. You can make people do it
  2. You can pay people to do it
  3. You can show people VALUE and they will do it themselves
Building upon the standing ovation she received - Bravo! 5AM is proud to join this community and expect to contribute technology solutions to the Value Chain discussed.


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