DPB:TCON 04 09 2005
NAMIC prospective IRB planning April 9, 2005, 3:30 ET
Attendees: Heather Pixley (Dartmouth), Martha Shenton (VA/Harvard), Randy Gollub (MGH), Steve Potkin (UCI), Jessica Turner (UCI), Sanjay Manandhar (BWH)
Regrets: Andy Saykin (Darmouth), Jim Kennedy (CAMH)
- IRB for prospective data.
- UCI has already received IRB approval for NAMIC + research community for their ongoing data collection so no new prospective IRB for NAMIC need to be filed.
- Dartmouth has the same approval but just for NAMIC community
- VA/Harvard needs to file for prospective IRB and Martha is waiting a specific paragraph from Andy Saykin to be ready to file (Heather will provide whatever is needed). Martha to file early next week because it takes about 1 month to get word back from her IRB and in the interim she cannot spend the money earmarked for projects using the prospective data.
- Steve didn't know if Jim (CAMH) was ready--he had filed, but no word yet.
ToDo: Marty to file after getting info from Heather. Sanjay to query with Jim about CAMH progress.
- Repository, data curation.
Randy queried on this topic. From the hard work of data upload for retrospective data by all DBP sites, this process has been streamlined. New data will be similar with just the data topology and data description added in the NAMIC wiki.
- Secondary-use of data.
Sanjay explained that the retrospective data uploaded around the time of the AHM was being used, but didn't know the extent of the usage. ToDo: Sanjay will report back after querying with Core 1 participants.
- More general secondary-use.
Randy suggested making the secondary use more general than NAMIC at consent phase from subjects so consent waivers will not have to filed with IRBs in the future. Marty is prepared to try this if it will not delay the process. ToDo: Randy to send text for more generic secondary-use to all.
- Genetic data.
UCI and Dartmouth will collect genetic data. VA/Harvard will not be collecting genetic data.
