Updates to RareConnect.org in 2014

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Denis Costello presents plans for new features and updates to the RareConnect platform for people living with a rare disease.

Health & Medicine Business Technology

Updates to RareConnect during
2014
EURORDIS Membership Meeting, Berlin May 2014
#ECRDBerlin

Overview of updates during
2014
1. Topic Groups
2. Open communities for ALL rare diseases but
without human translation features
3. Mobile Application
4. Implementation of advanced 3rd party
Pharmacovigilance analysis software
#ECRDBerlin

Topic Groups
• Discussions based on specific themes
• Expert moderators from EURORDIS Staff,
Volunteers and external areas of professional
competence
• Available in September 2014
#ECRDBerlin

Topic Groups - Initial
discussions
1. Specialised social services
2. Cross-Border Healthcare
3. Pregnancy and rare diseases
4. Role of patients in Clinical Trials
5. Role of patients in RD research
6. Diagnosis
7. Rare Cancers
8. Pharmacovigilance
9. Industry’s role in RD research and drug development
#ECRDBerlin

Communities for ALL diseases
• Up until now communities created “by hand”
bringing together recognised patient groups
• Very often no patient groups for very rare diseases
• This new feature will allow isolated individuals to
start a conversation, ask a question, tell their story
• Hopefully it will help start new relationships, and
eventually new patient groups
• Available in September 2014

RareConnect - Mobile App
• Almost 40% of visits to RareConnect come from
smartphones/tablets
• A mobile app will facilitate more regular
participation in RareConnect and help growth
• To be available at least on iPhone and Android
devices
• Available towards end of 2014
#ECRDBerlin

Involvement in IMI project:
WebAE
A project whose aim is to develop a proof of concept around using technology
to data mine the internet for drug adverse events
#ECRDBerlin

WebAE involvement
1. Panel of patients drawn from
RareConnect moderators to give
input
2. Implementation of AE data mining
algorithms within RareConnect
3. Communication re adoption of
Mobile Application
#ECRDBerlin

RareConnect 2014
updates
Thank you and please
always give us
feedback:
team@rareconnect.org

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2. Overview of updates during 2014 1. Topic Groups 2. Open communities for ALL rare diseases but without human translation features 3. Mobile Application 4. Implementation of advanced 3rd party Pharmacovigilance analysis software #ECRDBerlin

3. Topic Groups • Discussions based on specific themes • Expert moderators from EURORDIS Staff, Volunteers and external areas of professional competence • Available in September 2014 #ECRDBerlin

4. Topic Groups - Initial discussions 1. Specialised social services 2. Cross-Border Healthcare 3. Pregnancy and rare diseases 4. Role of patients in Clinical Trials 5. Role of patients in RD research 6. Diagnosis 7. Rare Cancers 8. Pharmacovigilance 9. Industry’s role in RD research and drug development #ECRDBerlin

5. Communities for ALL diseases • Up until now communities created “by hand” bringing together recognised patient groups • Very often no patient groups for very rare diseases • This new feature will allow isolated individuals to start a conversation, ask a question, tell their story • Hopefully it will help start new relationships, and eventually new patient groups • Available in September 2014

6. RareConnect - Mobile App • Almost 40% of visits to RareConnect come from smartphones/tablets • A mobile app will facilitate more regular participation in RareConnect and help growth • To be available at least on iPhone and Android devices • Available towards end of 2014 #ECRDBerlin

7. Involvement in IMI project: WebAE A project whose aim is to develop a proof of concept around using technology to data mine the internet for drug adverse events #ECRDBerlin

8. Stage 1 Consortium

9. WebAE involvement 1. Panel of patients drawn from RareConnect moderators to give input 2. Implementation of AE data mining algorithms within RareConnect 3. Communication re adoption of Mobile Application #ECRDBerlin

10.

11. medwatcher.or

12. RareConnect 2014 updates Thank you and please always give us feedback: team@rareconnect.org

Updates to RareConnect.org in 2014

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