Note: This webinar took place on 8 February 2018. You can find a video recording and the presentations used during the webinar below. Webinar introduction A patient registry is an organised system that uses observational study methods to collect uniform data (clinical and other) to evaluate specified outcomes for a population defined by a particular disease, condition,…Read more
Clinical Development and Trials
Patients Involved – Using user researchArticle
Novo-Nordisk, a pharmaceutical company, does user research with patients to enhance understanding of patients and to develop products that meet users’ needs.
Patients Involved – Patient organisation promotes Phase I clinical trialArticle
Involvement of the foundation ‘Children with SMA’ (spinal muscular atrophy) with an academic institution in Ukraine to design a pilot clinical trial addressing issues in SMA clinical trials.
Patients Involved – Patient organisations’ input on a rare disease registryArticle
Involvement of European Tuberous Sclerosis Complex Patient Organisations (E-TSC) establishing an European registry of patients living with Tuberous sclerosis complex (TSC) to address some gaps in understanding the clinical course of TSC and the therapeutic outcomes.
Patients Involved – Advisory boards on psoriasis clinical trialsArticle
Novartis Advisory Board meets with six National Psoriasis Patient Organisations to address patient relevant endpoints in psoriasis clinical trials.
Patients Involved – PsoriasisArticle
Collaboration between patients and a Psoriasis Association representative with the ‘Focus on the Patient’ division from GSK, to understand the impact of psoriasis on the lives of patients, their own views, and future clinical study endpoints.
Patients Involved – Patient feedback on a plain language summary of resultsArticle
Patients were asked by GlaxoSmithKline staff members to review a draft plain language summary from a completed Phase III study. The patients provided valuable feedback about the wording, structure, and content of the plain language summary.
Patients Involved – Patient sounding boardArticle
Collaboration between the International Alliance of Patient’s Organisations and local patient organisations with pharmaceutical company Novo Nordisk A/S to facilitate dialogue between them and develop learnings for future use.
Patients Involved – Ethnography and advocacy in sickle cell diseaseArticle
Medical anthropologists and patients gain insights into what is living with sickle cell disease.
Patients Involved – Patient organisations’ access to informationArticle
It is important to have information reachable for patient’s organisations, so they can publish it using their tools and making it more accessible for patients.
