Findacure workshop - Introduction to Rare Disease Patient Registries

Introduction to Rare Disease Patient Registries - 16th September 2016
As part of Findacure’s training series for small rare disease patient groups, our next workshop will focus on the topic of patient registries.

The workshop will take place on Friday, 16th September 2016, from 2pm to 5:30pm in central London (near Euston station). The day will introduce what patient registries are and how they can beneficially support research development. The workshop will also feature three case studies from rare disease charities who have supported registries: either by setting them up themselves, supporting a researcher initiative, or supporting a pharmaceutical company’s registry. By the end of the day, delegates will have an improved understanding of registries and the different approaches patient groups can take to get involved in a registry for their own condition.

If you would like to attend, please sign up via our Eventbrite page. SOLD OUT
(Register for the waiting list )

If you have any questions, please email Flóra via ■■■■■■■■■■■■■■■■■■■■■■.

“Introduction to Rare Disease Patient Registries”
Hamilton House, London
16th September, 2:00-5:30pm
1:30-2:00 Registration
2:00-2:10 Welcome from Findacure
2:10-2:45 ‘Introduction to patient registries and RD Connect’ – Chris Sotirelis, UK Thalassemia Society & RD Connect
2:45-3:20 ‘Taking steps towards an international registry: a patient organisation’s role’ – Avril Kennan, DEBRA Ireland
3:20-3:50 Tea and coffee break
3:50-4:25 ‘Developing a patient-centred national cystic fibrosis registry’ – Rebecca Cosgriff, Cystic Fibrosis Trust
4:25-5:00 ‘Opportunities for patient engagement in real world rare disease registries’ – Asha Hareendran, Evidera
5:00-5:30 Panel discussion session

12 workshop