Decentralised Clinical Trials - How Place Affects Data
Decentralised clinical trials, a potential solution for the complexity of rare disease clinical trials, but what impact may place have?
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Conor Douglas
- Dec 1, 2022
- 4 min
SPIN ‘at Work’ in Scientific, Patient and Policy Conferences in Canada
Since the commencement of our project, SPINs have increasingly taken the main stage in a variety of conferences in Canada.
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Florence Paterson
- Nov 25, 2022
- 3 min
Book: From Big Pharma to Commons
From Big Pharma to Commons, insight into social innovation in rare disease from a French perspective, a book written by Gaëlle Krikorian
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Claudio Cordovil Oliveira
- Nov 18, 2022
- 5 min
HTA: From Neoliberal Technocracy to Sustainable Democracy?
In our latest blog post, we look at the role of Health Technology Assessments in the distribution and allocation of health resources.
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SPIN Researcher Team
- Nov 11, 2022
- 2 min
Solidarity in Crowdfunding for Rare Disease Treatment
Crowdfunding has been an increasingly common way for patients with rare diseases to access expensive treatments around the world.
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Faisal Ali Mohamed
- Oct 28, 2022
- 3 min
First Allogenic CAR-T Treatment One Step Closer to Market Authorisation
The first allogenic CAR-T treatment is one step closer to market authorisation, a development that is certain to have a substantial impact.
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Florence Paterson
- Oct 21, 2022
- 8 min
Ultra-Rare Diseases and the Need to Invent a New Business Model
Ultra rare diseases make it a necessity to review the entanglement of scientific innovation industrial development, and healthcare.
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Marina Borba
- Oct 14, 2022
- 3 min
Scientific Colonialism in Rare Diseases: New Ethical Guidelines
A transnational initiative approved in 2018 a document to ethically guide scientific collaborations involving high and low-income countries.
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Shir Grunebaum
- Sep 30, 2022
- 3 min
Genomic Surveillance: The Key to Canada’s Public Health?
The public and private investment in genome sequencing and surveillance will likely have an impact on patients with rare diseases.
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SPIN Researcher Team
- Sep 23, 2022
- 3 min
Framing the Wicked Problem of Orphan Drugs
The wicked problem of orphan drugs, a new way of understanding the lenalidomide, a drug with several rare disease indications.
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Conor Douglas
- Sep 16, 2022
- 4 min
From diagnosis to novel gene therapy treatment in three years: Proof of alternative forms
It is the need for new kinds of policies and infrastructures that require our attention, and are a research focus of our SPIN consortium.
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Shir Grunebaum
- Sep 2, 2022
- 4 min
SPINRAZA Granted A Negative Reimbursement for Canadians with Spinal Muscular Atrophy
Earlier this week, SPINRAZA was granted a negative reimbursement for patients with type II and III SMA.
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Tineke Kleihout-Vliek
- Aug 26, 2022
- 3 min
The Dutch Orphan Drug Access Protocol
Earlier in 2022, in the Netherlands, two key stakeholders started a pilot of the Orphan Drug Access Protocol, bringing SPIN to the forefront
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Florence Paterson
- Aug 19, 2022
- 3 min
Preparing the Future of Therapeutic and Social Innovation: The Initiative of Patient Organizations
Patient organizations and their national coalitions are already at work developing a 4th National Plan for Rare Disease in France.
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Fernando Aith
- Aug 12, 2022
- 4 min
Public-private partnerships and pharmaceutical social innovation in Brazil
In the rare disease field, Partnerships for Productive Development (​​PDP) have gained prominence in recent years
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Shir Grunebaum
- Aug 6, 2022
- 3 min
Cells Causing Tumours in Tuberous Sclerosis Complex: A Medical Mystery Solved
On July 6 it was announced that a group of researchers had identified the cells that cause tumours in patients Tuberous Sclerosis Complex
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Florence Paterson
- Jul 15, 2022
- 6 min
About Cooperation and Clusterization Involved in the Development of Rare Disease Drugs
The aim here is to focus on the type of cooperation and clusturization involved in the development of drugs for rare diseases.
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Tineke Kleihout-Vliek
- Jul 8, 2022
- 4 min
Focusing on Patient Stories
With so much emphasis on qualitative experiential data, it is worth bearing in mind that sociology tells us that setting shape experiences.
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Conor Douglas
- Jul 1, 2022
- 3 min
From Studying to Intervening: Advancing Social Pharmaceutical Innovation
The point is, SPIN is possible. It is taking place.
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Tineke Kleihout-Vliek
- Jun 10, 2022
- 3 min
What Counts In Pricing Drugs?
As of January 1st, 2022, the Dutch collective basic benefits package contains Kaftrio. Kaftrio is a drug for cystic fibrosis, a rare...
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