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WO 2013/009890 A2 17 January 2013 (17.01.2013) P O P C T (12) INTERNATIONAL APPLICATION PUBLISHED UNDER THE PATENT COOPERATION TREATY (PCT) (19) World Intellectual Property Organization International Bureau (10) International Publication Number (43) International Publication Date WO 2013/009890 A2 17 January 2013 (17.01.2013) P O P C T (51) International Patent Classification: (81) Designated States (unless otherwise indicated, for every G06Q 50/24 (2012.01) kind of national protection available): AE, AG, AL, AM, AO, AT, AU, AZ, BA, BB, BG, BH, BR, BW, BY, BZ, (21) International Application Number: CA, CH, CL, CN, CO, CR, CU, CZ, DE, DK, DM, DO, PCT/US20 12/046281 DZ, EC, EE, EG, ES, FI, GB, GD, GE, GH, GM, GT, HN, (22) International Filing Date: HR, HU, ID, IL, IN, IS, JP, KE, KG, KM, KN, KP, KR, 11 July 2012 ( 11.07.2012) KZ, LA, LC, LK, LR, LS, LT, LU, LY, MA, MD, ME, MG, MK, MN, MW, MX, MY, MZ, NA, NG, NI, NO, NZ, (25) Filing Language: English OM, PE, PG, PH, PL, PT, QA, RO, RS, RU, RW, SC, SD, (26) Publication Language: English SE, SG, SK, SL, SM, ST, SV, SY, TH, TJ, TM, TN, TR, TT, TZ, UA, UG, US, UZ, VC, VN, ZA, ZM, ZW. (30) Priority Data: 61/507,53 1 13 July 201 1 (13.07.201 1) (84) Designated States (unless otherwise indicated, for every 61/610,807 14 March 2012 (14.03.2012) kind of regional protection available): ARIPO (BW, GH, GM, KE, LR, LS, MW, MZ, NA, RW, SD, SL, SZ, TZ, (71) Applicant (for all designated States except US): THE UG, ZM, ZW), Eurasian (AM, AZ, BY, KG, KZ, RU, TJ, MULTIPLE MYELOMA RESEARCH FOUNDA¬ TM), European (AL, AT, BE, BG, CH, CY, CZ, DE, DK, TION, INC. [US/US]; 383 Main Avenue, 5th Floor, Nor- EE, ES, FI, FR, GB, GR, HR, HU, IE, IS, IT, LT, LU, LV, walk, CT 0685 1 (US). MC, MK, MT, NL, NO, PL, PT, RO, RS, SE, SI, SK, SM, TR), OAPI (BF, BJ, CF, CG, CI, CM, GA, GN, GQ, GW, (72) Inventors; and ML, MR, NE, SN, TD, TG). (75) Inventors/Applicants (for US only): GIUSTI, Kathyrn, E. [US/US]; 143 Old Studio Road, New Canaan, CT Published: 06840 (US). CAPONE, Walter [US/US]; 128 Jonathan — without international search report and to be republished Road, New Canaan, CT 06840 (US). PERKINS, Louise upon receipt of that report (Rule 48.2(g)) [US/US]; 58 Old Dike Road, Trumbull, CT 0661 1-3310 (US). (74) Agents: VAN GOOR, David, W. et al; Wilson Sonsini Goodrich & Rosati, 650 Page Mill Road, Palo Alto, CA 94304-1050 (US). < © 00 © © o (54) Title: METHODS FOR DATA COLLECTION AND DISTRIBUTION (57) Abstract: Provided are methods of performing research in which participation is incentivized by early access to the data and samples collected. Also provided are methods for distributing research data. METHODS FOR DATA COLLECTION AND DISTRIBUTION CROSS-REFERENCE [0001] This application claims the benefit of U.S. Provisional Applications No. 61/507,531, filed July 13, 201 1, and No. 61/610,807, filed March 14, 2012, each of which is incorporated herein by reference in its entirety. BACKGROUND OF THE INVENTION [0002] Multiple myeloma is a cancer of the plasma cells in bone marrow. [0003] There is a need to develop next-generation multiple myeloma treatments that extend the lives of patients and lead to a cure. SUMMARY OF THE INVENTION [0004] Disclosed herein are methods of research comprising: enrolling one or more subjects, wherein at least one of the subjects is diagnosed with a disease; collecting one or more biological samples and clinical data from at least one of the subjects; analyzing a portion of at least one of the biological samples to produce a profile of at least one of the subjects; storing the clinical data and the profile in a data repository; and granting data repository access to a stakeholder for a first period of time in exchange for support, wherein the support comprises funding, participation, and/or a combination thereof, and thereby conducting research. In some embodiments, the enrolling occurs at one or more enrolling sites. In some embodiments, the enrolling sites comprise hospitals, academic medical centers, community health centers, government agencies, government funded medical centers, and/or a combination thereof. In some embodiments, the enrolling sites are chosen by a scientific advisory board. In some embodiments, the scientific advisory board comprises a non-profit organization or members thereof, non-profit researchers, academic researchers, or a combination thereof. In some embodiments, each of the subjects is diagnosed with the disease. In some embodiments, at least one of the subjects is newly diagnosed with the disease. In some embodiments, each of the subjects is newly diagnosed with the disease. In some embodiments, the disease is a cancer. In some embodiments, the disease is a myeloma. In some embodiments, the disease is multiple myeloma. In some embodiments, the disease is a bone disease. Some embodiments further comprise collecting the biological samples and the clinical data from each of the subjects. In some embodiments, at least one of the biological samples comprises a blood sample, a plasma sample, a bone marrow sample, a bone marrow aspiration, a hair sample, a urine sample, a stool sample, a breath sample, a skin sample, a fine-needle aspiration, a tissue biopsy, a spinal fluid sample, a tear sample, a mucus sample, an amniotic fluid sample, a sperm sample, a tissue sample, or a combination thereof. In some embodiments, the biological samples comprise a blood sample and a bone marrow sample. In some embodiments, the clinical data comprise patient reported data, a vital sign, a medical image, and/or a combination thereof. In some embodiments, the medical image comprises an x-ray image, a magnetic resonance image, a computed axial tomography image, a positron emission tomography image, a single photon emission computed tomography image, an ultrasonic image, a fluoroscopy image, a thermography image, a scintigraphy image, a radioisotope image, a photo acoustic image, and/or a combination thereof. In some embodiments, the biological sample and the clinical data are collected throughout a course of treatment for the disease. In some embodiments, the collecting is performed prior to a first treatment. In some embodiments, the collecting is performed prior to, concurrently with, or following a treatment in the course of treatment. In some embodiments, the collecting is performed prior to, concurrently with, or following each treatment in the course of treatment. In some embodiments, the collecting is performed following the course of treatment. In some embodiments, the collecting is performed following a relapse of the disease. In some embodiments, the course of treatment for the disease is determined individually for each of the subjects. In some embodiments, the course of treatment is determined by a personal physician. In some embodiments, the course of treatment for the disease does not use experimental drugs. In some embodiments, the course of treatment comprises drugs with labeled indications for the disease. In some embodiments, the course of treatment comprises drugs with off-label indications for the disease. Some embodiments further comprise analyzing a portion of each of the biological samples to produce a profile of each of the subjects from which the biological samples have been collected. In some embodiments, the analyzing is performed by a third-party organization. In some embodiments, the third party organization is a not-for-profit organization, for-profit organization, a biomedical research institute, a hospital, a pharmaceutical company, a biotech company, a laboratory, or a combination thereof. In some embodiments, the analyzing comprises analysis of a polynucleotide, a polypeptide, a cell, a tissue, or a combination thereof. In some embodiments, the analyzing comprises sequencing of one or more polynucleotides using a chain-termination method, a dye-terminator method, a sequencing by hybridization method, a sequencing by synthesis method, or a high resolution microscopy-based technique. In some embodiments, the profile comprises a polynucleotide sequence, a polypeptide sequence, an mRNA expression level, a protein expression level, a cellular morphology, a karyotype, a tumor size, a tumor density, or a combination thereof. In some embodiments, the data repository is internet accessible. In some embodiments, the data repository is accessed through a researcher portal. In some embodiments, the researcher portal is a web interface that enables the data to be searched, sorted, categorized, summarized, downloaded, and/or analyzed. In some embodiments, the stakeholder comprises a for-profit corporation. In some embodiments, the support is funding. In some embodiments, the stakeholder comprises at least one of the enrolling sites. In some embodiments, the support is participation. In some embodiments, the first period of time is from about 1 month to about 3 years. In some embodiments, the first period of time is about 5 months, about 6 months, or about 9 months. Some embodiments further comprise extending data repository access to a second stakeholder for a second period of time. In some embodiments, the second stakeholder comprises at least one of the one enrolling sites. In some embodiments, the support is participation. In some embodiments, the second period of time begins following the first period of time. In some embodiments, the second period of time is from about 1 month to about 2 years. In some embodiments, the second period of time is about 1 month or about 3 months. Some embodiments further comprise granting data repository access to everyone following the first period of time. Some embodiments further comprise granting data repository access to everyone following the second period of time. Some embodiments further comprise storing the biological sample in a tissue bank. In some embodiments, access to the tissue bank is granted along with access to the patient data repository.
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