EFTA00633429.pdf

From: Lesley Groff To: Jeffrey Epstein <[email protected]> Subject: Joe Thakuria Date: Sun, 02 Mar 2014 15:53:28 +0000 Hi Richard, my study is still awaiting irb approval at mgh. Once that goes through, there'll be a consent form for Jeffrey to review and sign and then I can forward the invoice from Illumina for the rapid turn-around-time whole genome. Once we have his data and go through the analyses Illumina provides, I can discuss with him any extra value from using additional tools for analyses. The irb approval process will take 3-5 weeks in the best case scenario. As a physician, I could just order it for him from Illumina but Jeffrey and I agreed the research route made the most sense. For one, ordering a whole genome on a (presumably) healthy patient is not currently indicated. Doing this as a patient (at least at mgh) would also entail creating a medical record of the encounter and the results. Our plan is to keep this data private - at least until he's had a chance to review with me. So, for this reason, we also agreed to go the "research study" route with his genome. I've discussed doing Jeffrey's genome through my mgh study with george church and he's fine with it. I'll coordinate getting JE's samples from the pgp and moving all of it, or a portion (aliquots of the dna and cell lines) to the new study (again, after the mgh study is formally approved - that's the bottleneck now). Lesley, with Jeffrey not on the cc, please pass the info above on to him. Let me know if he has any questions. I can clarify anything by email or phone. Maybe there was a misunderstanding when I mentioned the 'rapid turnaround time' offering from illumina? This just means illumina's role - the sequencing of the sample - is expedited. There is no way, unfortunately, to expedite the MGH IRB process for approving human research studies. (A lot of us wish there was!) Joe Thakuria Joseph V. Thakuria, MD, MMSc Medical Genetics and Metabolism Attending Physician Director, MGH Stickler Syndrome Program Harvard Catalyst CRC Protocol Review Committee Massachusetts General Hospital 185 Cambridge St., Rm. 2222 Boston MA 02115 Office: Fax: Emai : EFTA00633429