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Rare Advocacy Intake Form

Rare Advocacy Intake Form

Let’s explore your real-world data goals

Pulse partners with both industry and patient advocacy groups to develop registries that enable a range of longitudinal observational studies, including natural history where the data meets regulatory standards. Our platform approach adheres to global privacy and security standards (such as HIPAA and GDPR) facilitating secure data collection and real-world data sharing through a transparent governance structure. Our mission is to assist rare disease communities accelerate scientific research and the delivery of new therapeutic products to market. 

Please complete the intake form below to accelerate our discussion and help Pulse assess what product or package best fits your goals.  

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What types of data do you wish to collect directly from patients?
About how many questions do you anticipate asking patients to complete?
Do you want to include retrospective data (data that has already been collected) from patients? (For example, medical records data from EHR)
Do you want to collect clinical data from clinicians at medical institutions (or sites)?
Are there existing registries/databases you would like to migrate data from or link to the registry?
Are there any other databases you would like to include or develop as part of the registry? (For example, claims data or biobank data)
Do you require support in establishing the governance structure and managing the individuals and committees who oversee the registry, approve research proposals, and review data access requests?
Do you require support writing the protocol or handling the IRB submission?
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