Landscape worksheet
Before building, take a beat and find out who is already working on your condition, your variant, or your subgroup. This page goes with Chapter 3. It records where you searched, what each existing effort does and does not do, and what you decided to do about each gap.
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| Registry |
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| Condition |
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| Completed by (role) |
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| Date |
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| Version |
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Where we searched
| Date |
Where (PubMed, ClinicalTrials.gov, other) |
Search terms |
What we reviewed |
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Who is already in the space
| Effort |
Kind (registry, natural history study, precision medicine program, advocacy group, trial) |
Who leads it |
What it collects, and from whom |
What it does not collect |
Likely reason (funding, bandwidth, institutional support, a missing modality) |
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Our decision for each gap
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Join, amplify, fill alongside, or build |
Why |
Who we would talk to first |
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The newly diagnosed family test
Imagine a newly diagnosed family who finds both your planned registry and the closest existing effort.
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Our answer |
| Would they know which to choose? |
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| What would tell them? |
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| What would we change so the choice is clear? |
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