Our driving goal is to help patient organizations better achieve a key goal of their own: accelerate and improve clinical research for new treatments. We work with and serve neuromuscular patient communities by helping them expertly unlock and amplify the power of patient data to make clinical trials and research supporting new therapies more efficient and effective. We ensure patient data adds up to patient impact by identifying opportunities for collaborative research across databases, disciplines, and stakeholders – and we work across stakeholders to break down the barriers in the way of getting that work done. Patient organizations are pivotal partners with particularly critical roles to play in our collaborations – from identifying opportunities to helping us form and launch coalitions to characterizing unmet need and shaping patient-focused agendas to disseminating results and rallying the field to adopt improvements. If you would like to connect with cTAP about contributing to our current work or forming a new collaboration, contact us for a conversation.
cTAP helps scientists, researchers, and clinical registry investigators maximize the potential of their patient data to fuel research progress and realize their own research project and publication goals through collaborative advanced data science.
Our collaborative research approach engages academics along with patient organizations and drug developers in a neutral, non-competitive environment for merit- and progress-centric collaborative science to address priority unmet patient and field needs. We make it easy to collaborate with peers, patient organizations, and pharmaceutical research teams in a simultaneous and fair process. Academic leaders and clinical networks have the opportunity to access advanced data science expertise and use cTAP tools on their own curated data. cTAP capabilities simplify data pooling for academic collaborators, resulting in accelerated development, faster insights, and a lower barrier to sharing and replication of results.
The cTAP platform and collaboration is also set up to protect patient data and investigator control. De-identified patient data are housed in a highly secure environment. Researchers retain full control of data use and seniority of authorship. cTAP can also provide support to collaborators to cover costs for data mining and processing, activities that are not always adequately supported by academic grants.
The payoffs of participation with cTAP are profound. Researchers author more papers, promote their groups’ capabilities, access metrics demonstrating the value of curated data to funding agencies, and speed the development of new treatments for patients.
cTAP research matters for all working to advance neuromuscular patient clinical science – including biopharmacutical companies developing new treatments for Duchenne and other neuromuscular disorders.
While they may pursue distinctive proprietary goals, biopharmaceutical companies developing therapies in rare disease have a shared stake in supporting noncompetitive research that can elevate the bar for all research in the field. To achieve this, cTAP convenes collaborations and curated conversation across stakeholders to dynamically identify evolving priority shared research needs, assemble patient data resources that will enable answers, and conduct and publish world-class non-competitive data science of near-term, actionable value. cTAP science yields insights and tools that meaningfully improves clinical design and research.
As a tangible example, in our founding collaboration around Duchenne, we have ten years of history and impact establishing an annually renewed research agenda and 15 peer-reviewed publications with models and methods referenced in recent successful drug registrations. This has been made possible by critical cTAP-Duchenne collaboration resources, including the largest database of de-identified longitudinal clinical data in the Duchenne community, currently more than 18,000+ patient visits representing real world evidence and natural history for 2,500+ patients from 33 clinical centers in Europe and the U.S., as well as >3000 patient visits from almost 600 patients enrolled in clinical trials.