CIPHER Global Cohort Collaboration Meeting 24 th - 25 th April 2017 San Servolo Island, Venice, Italy

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1 CIPHER Global Cohort Collaboration Meeting 24 th - 25 th April 2017 San Servolo Island, Venice, Italy

San Servolo Servizi Isola di San Servolo 30124 Venezia t. +39 041 2765001 f. +39 041 2765402 info@sanservolo.provincia. ven

2 San Servolo Servizi Isola di San Servolo Venezia t f venezia.it Check-in: 1 pm Check-out: 11 am VENUE & ACCOMMODATION The CIPHER meeting will take place in the meeting room 6 & 7 Breakfast will be served in Sala Basaglia, starting from 7.15 am Lunches on April 24 th and 25 th and Dinner on April 23 rd will be also served in Sala Basaglia Lunch on April 23 rd will be upon individual arrangements.

3 HOW TO GET THERE Arriving at Marco Polo International Airport, you have several options to go to San Servolo: 1. DIRECT from Marco Polo airport to San Servolo A private transfer will be arranged by the organization according to your flight schedule. 2. INDIRECT from Venice Santa Lucia Railway Station A. First take the public Vaporetto to the centre of Venice ( San Zaccaria boat stop). B. Then take the public Vaporetto to the Island of San Servolo. Average cost: Between 7-12 duration: about 100 minutes A. Vaporetto from Venice Santa Lucia Railway station to San Zaccaria n 4.1 or n 5.1 Vaporetto The n 4.1 or n 5.1 Vaporetto (public transport) connects the railway station with the city center in the fastest way, with less stops than other touristic Vaporettos. It departs in front of the railway station. Once arrived at the San Zaccaria boat stop, follow directions to Vaporetto boat n 20 for San Servolo ( direct trip, no stops). Tickets can be bought at Santa Lucia boat stop: one ticket costs 7 euros for 1-hour trip B. Vaporetto from San Zaccaria (Venice centre) to San Servolo n 20 Vaporetto The n 20 Vaporetto (public transport) connects the city center with San Servolo island. It departs from San Zaccaria, the waterfront adjacent to Piazza San Marco. The landing dock for the n 20 vaporetto is San Zaccaria Monumento in front of the Londra Palace Hotel. The trip lasts about 5 minutes, without intermediate stops. Tickets can be bought at San Zaccaria kiosk, if the duration of your previous ticket expired

DINNER IN VENICE CITY Monday 24 th April, 2017 8 pm LINEADOMBRA Dorsoduro 19, 30123 - Venezia ph +39 041 241 1881 www.ristorantelineadombra.

4 DINNER IN VENICE CITY Monday 24 th April, pm LINEADOMBRA Dorsoduro 19, Venezia ph A private boat back and forth from the island will be arranged accordingly Meeting point : CIPHER Hospitality Desk Meeting time : kindly check at Hospitality

5 Monday 24 April Topic Speaker Details Time Welcome Marissa Vicari Linda-Gail Bekker 9:00-9:10 10 min Session 1: Our vision: As a community of experts in paediatric and adolescent HIV, what is our collective vision for cohort research over the next 5 to 10 years? What do we want to happen in 5-10 years time with regard to making good use of the huge amount of data that has been collected and will continue to be collected? Developing a collective vision Lynne Mofenson The spectrum of cohorts in CIPHER and the added value that brings Questions of global importance that can be addressed by working together through CIPHER Informing programme planning: 9:10-9:30 (20 min) o Reaching targets, and knowing when we ve reached them Informing policy: o Informing WHO guidelines, and the effect of changing guidelines: how quickly/well are they implemented and what is the impact? Data quality and curation Research questions: deeper data and working with smaller cohorts HEU: bringing these cohorts together Feedback and first thoughts on 5-10 year vision: Is there a role for a one stop shop observational resource to address scientific and policy needs? Reflection on what would it take? Is it worth it (is the juice worth the squeeze)? At what point should we think about prospective data collection? 9:30-10:30 (1h) Session 2: Informing programme planning: Reaching global targets and knowing we ve reached them Facilitator: Martina Penazzato Use of cohort data to improve global estimates Mary Mahy Update on future plans and needs for SPECTRUM. What data is available and what is needed? Brief review of GARPR: what is and what is not being provided by country programmes (for infants, children and adolescents) and other sources; what is the role for cohort data? 10:30-11:00 Coffee break: 11:00-11:20 (20 min) Use of observational data in modelling and metamodeling: forecasting Jeannie Collins Future plans and data needs. What data is needed? Consideration of potential role for cohort data and CIPHER. 11:20-11:50

6 Use of cohort data in implementation and introduction Nandita Sugandhi This will consider potential opportunities for use of cohort data in informing supply and procurement and the introduction of new formulations What are the questions where more data would be useful? Question of representativeness, geographic gaps, particular sub-populations, advocacy. 11:50-12:20 12:20-13:20 (1h) Are there non-research data that CIPHER could potentially bring into play that could help inform these questions? Lunch: 13:20-14:20 (1 hr) Session 3: The elephant in the room: data acquisition and curation: Despite increasing interest in bigger and better data, investment in how data is collected and collated is getting short-changed. PEPFAR investment in this is declining, as is NIAID investment in IeDEA, for example. Is there a more active role CIPHER could play to help cohorts meet a certain standard with respect to data quality? The investments need to be made if we re going to have confidence in all of these data. Facilitator: TBD Lessons learned from CIPHER All things data Focus on ICAP/Optimal Models and EGPAF Focus on IeDEA Ethics and data ownership Mary-Ann Davies PEPFAR representat ive involved in data analysis Elaine Abrams/Ly nne Mofenson Mary-Ann Davies Reflections from the CIPHER experience: what issues with respect to respect to data collection and curation and what gaps are there within the various CIPHER Cohort Collaboration partners? Reflections from PEPFAR: explanation about PEPFAR databases, what data is collected from PEPFAR funded sites and how is it managed, reliability of the data. Vision for data management moving forward. Potential to collaborate with CIPHER. Data use and routine programme data in SSA: ICAP/Optimal Models and EGPAF Data collection and curation in IeDEA, how it is done, challenges and future directions Coffee break: 16:30-16:45 (15 min) Is there a more active role CIPHER could play to help cohorts improve data/meet some standards, at least on the maternal and paediatric side? Is there a potential capacity building role for CIPHER here? Principle of you touch it and it changes, if we could change sites around the world so they were collecting good data, potentially we would improve care. We ve talked about CIPHER being a platform for sharing forms and best practices, but we haven t operationalized that. What would that look like? 14:20-14:40 (10 min :40-15:10 15:10-15:40 15:40-16:00 (10 min :00-16:30 16:45-17:45 (1hr)

7 Opening and recap from day one Marissa Vicari Tuesday 25 April Brief recap, feedback from the group 9:00-9:20 (20 min) Session 4: Informing policy: research gaps to inform WHO guidelines. Looking at the effect of changing guidelines: how quickly/well are they implemented and what is the impact? Facilitator: TBC CIPHER/WHO Global Research Prioritization Use of cohort data to inform policy change Use of observational data to support pharmacovigilan ce Martina Penazzato/ Marissa Vicari Martina Penazzato Carlo Giaquinto and Ali Judd Presentation of the Global Research Agendas for children and adolescents living with HIV, brief overview of methods. Overview presentation: review of the policy landscape, including PADO and CTA. Role of observational data in the era of reduced RCTs. This will discuss the how to, the challenges and potential opportunities to expand and innovate the PV work Coffee break: 10:50-11:10 (20 min) 9:20-9:50 9:50-10:20 10:20-10:50 (20 min +10 Facilitator 11:10-11:40 (30 min) Session 4: Research questions and diving deeper: In cohorts that have deeper data (neuroimaging, DXA scans or echocardiograms etc.) where no one cohort will have enough data to say more than what is happening for them locally, how could CIPHER play a role in trying to have more globally representative data on these more intensive evaluations. This focuses on questions of more scientific interest, as differing from the more descriptive global policy questions. Facilitator: TBD Research questions and diving deeper Session 4 Annette Sohn (TBC) What are the data merger challenges for these questions? Which questions are feasible (easier) to answer from a collaborative approach, which are more difficult? Lunch: 13:00-14:00 (1 hr) 11:40-12:00 (20 min) 12:00-13:00 (1 hr) Session 5: HIV Exposed-uninfected children: bringing these cohorts together is where CIPHER can play a role as this hasn t happened yet, and people are increasingly recognizing the importance of the health of this population.facilitator: George Seage Overview Closing session: Wrap-up Amy Slogrove George Seage Lynne Mofenson / Marissa Vicari What type of data do different cohorts have? What are the issues around research cohorts vs more routine programme data for cohorts of infected children? 14:00-14:30 30 min 14:30-16:00 1hr30 min Final discussion, overview of next steps/action points 16:00-17:00 (1h, if needed)

Email: marissa.vicari@iasociety.org tamara.torri@iasociety.

8 CONTACT DETAILS CIPHER Committee Secretariat International AIDS Society Tamara Torri - Marissa Vicari Avenue de France 23 CH-1202 Geneva Switzerland Tel: Fax: marissa.vicari@iasociety.org tamara.torri@iasociety.org Organizing Secretariat : High Performance Travel Srl Isabella Ferrarese Tel: Mobile: isabella@hpt.it

9 ENJOY YOUR STAY IN VENICE! The CIPHER Organizing Secretariat

INTERNATIONAL SUMMER SCHOOL

INTERNATIONAL SUMMER SCHOOL OF RENAL PATHOLOGY- 2011 May 23rd - June 4th 2011 We are pleased to announce the first CME accredited International Summer School of Renal Pathology to be held at the University