Search Results - "Douglas, Conor M.W"

Governing biological material at the intersection of care and research: the use of dried blood spots for biobanking by Douglas, Conor M W, van El, Carla G, Faulkner, Alex, Cornel, Martina C

“…A series of governance issues currently surrounds the multiple uses and multiple users of dried blood spots (DBS) for research purposes. Internationally there…”
Get full text

Methodology for constructing scenarios for health policy research: The case of coverage decision-making for drugs for rare diseases in Canada by Douglas, Conor M.W., Panagiotoglou, Dimitra, Dragojlovic, Nick, Lynd, Larry

“…•Here specific scenario methodology are described to help inform health policy.•Methods are demonstrated in coverage decision-making for drugs for rare…”
Get full text

Why orphan drug coverage reimbursement decision-making needs patient and public involvement by Douglas, Conor M.W, Wilcox, Elizabeth, Burgess, Michael, Lynd, Larry D

“…Highlights • Patients and publics can play a role in orphan drugs coverage decision-making. • This could be in priority setting, criteria development, and…”
Get full text

Lessons learned from the Canadian Fabry Disease Initiative for future risk-sharing and managed access agreements for pharmaceutical and advanced therapies in Canada by Douglas, Conor M.W., Grunebaum, Shir

“…•Risk sharing agreements can deal with evidentiary uncertainty and contain drug costs.•Canada has relatively little experience with these health policy…”
Get full text

Social pharmaceutical innovation and alternative forms of research, development and deployment for drugs for rare diseases by Douglas, Conor M. W, Aith, Fernando, Boon, Wouter, de Neiva Borba, Marina, Doganova, Liliana, Grunebaum, Shir, Hagendijk, Rob, Lynd, Larry, Mallard, Alexandre, Mohamed, Faisal Ali, Moors, Ellen, Oliveira, Claudio Cordovil, Paterson, Florence, Scanga, Vanessa, Soares, Julino, Raberharisoa, Vololona, Kleinhout-Vliek, Tineke

“…Rare diseases are associated with difficulties in addressing unmet medical needs, lack of access to treatment, high prices, evidentiary mismatch, equity,…”
Get full text

Challenges for the European governance of synthetic biology for human health by Douglas, Conor MW, Stemerding, Dirk

“…Synthetic biology is a series of scientific and technological practices involved in the application of engineering principles to the design and production of…”
Get full text

Rethinking biobanking and translational medicine in the Netherlands: how the research process stands to matter for patient care by Douglas, Conor M W, Scheltens, Philip

“…Biobanking has been identified as one of the key components of translational medicine, and while current models for translation tend to focus their attention…”
Get full text

Medical Technology into Healthcare and Society by Douglas, Conor M.W.

Get full text

Parental perspectives on retention and secondary use of neonatal dried bloodspots: a Dutch mixed methods study by Jansen, Marleen E, van den Bosch, Lion J M, Hendriks, Marjolein J, Scheffer, Mariska M J, Heijnen, Marie-Louise, Douglas, Conor M W, van El, Carla G

“…Neonatal bloodspot screening (NBS) identifies conditions to offer early intervention and minimize irreversible damage. NBS policies guide a comprehensive…”
Get full text

The Role of Bioinformatics in Facilitating Translational Science and Medicine by Conor M.W. Douglas

“…Significant challenges exist around the translation of the enormous amounts of data generated from large-scale gene and genome sequencing that has been…”
Get full text

Governing the research-care divide in clinical biobanking: Dutch perspectives by Boeckhout, Martin, Douglas, Conor M.W.

“…Biobanking, the large-scale, systematic collection of data and tissue for open-ended research purposes, is on the rise, particularly in clinical research. The…”
Get full text

Mothers' Views on Longer Storage of Neonatal Dried Blood Spots for Specific Secondary Uses by van Teeffelen, Sarah R, Douglas, Conor M W, van El, Carla G, Weinreich, Stephanie S, Henneman, Lidewij, Radstake, Maud, Cornel, Martina C

“…Neonatal dried blood spots (DBS) present a wealth of data. Currently, many countries discuss DBS storage, management and use. We collected data in the…”
Get more information

The Roles of User/Producer Hybrids in the Production of Translational Science by Douglas, Conor M.W., Lander, Bryn, Fairley, Cory, Atkinson-Grosjean, Janet

“…This paper explores the interface between users and producers of translational science (TS) through three case studies. It argues that effective TS requires a…”
Get full text

Governing synthetic biology for global health through responsible research and innovation by Douglas, Conor M. W., Stemerding, Dirk

“…Synthetic biology (SynBio) is a global endeavour with research and development programs in many countries, and due (in part) to its multi-use characteristics…”
Get full text

International Experiences and Made-in-Canada "Social Pharmaceutical Innovations" as Responses to Challenges Facing Drugs for Rare Diseases by Douglas, Conor M W

“…Significant challenges are associated with the availability of and access to treatments for rare diseases. In this issue, Sirrs et al. (2023) frame challenges…”
Get more information

Special issue editorial: synthetic biology, global health, and its global governance by Douglas, Conor M. W., Stemerding, Dirk

“…Issue Title: Special Issue: Synthetic Biology, Global Health,and its Global Governance…”
Get full text

Unhealthy Pharmaceutical Regulation: Innovation, Politics and Promissory Science by Douglas, Conor M W

Get full text