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Type of
Assigned to Initiative Website Contact Purpose Funding Source Participants Data Proprietary Issues Regulatory Issues Other/ Comments
Materials Harmonized
Software Data/Tissue Transfer/ HIPAA IRB HIPAA/ IRB
Licensing Access Data Sharing Biospec Publication Automated Unique Patient HIPAA Consent IRB Consent Notice/Conse
Model? Principles? Agreement? Agreement? Policy? de-ident? Identifiers? Implications? Form? Implications? Form Used? nt Form?
NIH
Develop P2P Web-enabled search
and retrieval of specimens; extract
information from path reports. Based
on CDEs from CPCTR search arhi IRB model consent--
ves of path reports. Has had to go Info de- sharon winters will place
through a meaty set of IRB and identified; in archive--mult orgs
regulatory hurdles. Good news: individuals have sharing all this--local and
Each instituttions are very individual; codebooks multiple
Shared Pathology many different compliance (honest brokers developed software to de-
Informativs requirements. We can share how Pittsburgh; Harvard- left to individual Development identify clinical data from
Mike Becich Network (SPIN) ?? David Bercowicz they approached these hurdles. NCI UCLA; Y participants) Y Y in progress pathology reports
Discussed with Pat
Harsche. As far as tissue
sharing. Not much has
gone on to date.
Pennsylvania New funding from review sample
Cancer Alliance state of PA. Study agreements developed for
Bioinformatics F6aggregating protection of human
Consortium http:/www.pcabc.upmc. tissue for public. subjects/ privacy and IP
Jack London (PCABC) edu Nancy Whalen F81 rightsI
Institution's
IRB:
Developed
common IRB
protocol.
Dan Crichton, Develop a knowledge system that Several
Bob Robbins/ Early Detection NASA/JPL; links together EDRN data assets into months to
Wendy Research http://www3.cancer.gov/ Michael a virtual data system; common get through
Patterson Network (EDRN) prevention/cbrg/edrn/ Kamerick, UCSF informatics structure NCI FHCRC JPL, NCI Y Y the process
will pilot key aspects of NBN
concept; will support development of
Prostate SPORE common biospecimen coordination
National system and informatics infrastructure 11 institutions;
Biospecimen for current prostate cancer research Harvard, MSKCC
John Network (NBN) http://prostatenbnpilot.n Paul Fearn, collaborative projects at participating and Johns Hopkins Blueprint from NDOC;
Speakman Pilot ci.nih.gov/default.asp John Speakman SPOREs NCI have lead roles Y Y Y Y Y Y Pilot begun 1.2004
The goals of the NCI restructuring with the
(Jeffrey Shilling - creation of the Center for Cancer Research
>Tracy Thompson are:
(Chief, Off (1) to foster interdisciplinary research,
Communication) -> (2) to facilitate translational research,
Eric Hale -> Karen (3) to expedite technology development,
Maurey (Chief, Tech (4) to enhance training, particularly in Confidentialit
Transfer 301 435 interdisciplinary and translational research, and y& Forms may be
3115) - Interviewed 9- (5) to build partnerships between NCI and Disclosure Confidentiality & provided at a
9-05) other NIH Institutes, Federal agencies, forms : Disclosure Confidentiality & Confidentiality & no formal policy no formal policy later date by Ms.
NCI Center for (Wendy Patterson -> academia, biotechnology companies and the http://ttb.nci.n forms : Disclosure forms : Disclosure forms : obtained ; occurs obtained ; occurs at federal - not Karen Maurey,
Cancer Research Mark Watson -> pharmaceutical industry. ih.gov/forms. occurs at NIH http://ttb.nci.nih.g http://ttb.nci.nih.gov/ http://ttb.nci.nih.gov no formal policy at individual individual investigator federal - not covered by covered by acting Chief, Thank you to Ms. Karen Maurey
Tristan Fiedler (CCR) http://ccr.nci.nih.gov/ Greg Eley at BAH) http://ccr.cancer.gov/about/message.asp NCI html level ov/forms.html forms.html /forms.html was obtained investigator level level HIPAA HIPAA Tech Transfer for the valuable information.
Biomedical Establish cyberinfrastructure for Mark on travel 8/24; he'll
Informatics virtual data grid; shared network and be in Bar Harbor next
Research distributed database environment for week. We can do this
Carol Bult Network (BIRN) www.nbirn.net Mark Ellisman >20 institutions NCRR UCSD face to face.
Steve Moldin,
Ass. Dir, NIMH
NIMH Human (administrator
John Genetics for NIMH-GI
Speakman Initiative http://nimhgenetics.org/ samples) NIMH
http://www.hhmi.org
HHMI is /pdf/investigator-
involved guide.pdf
The Institute is a nonprofit medical research primarily with http://www.hhmi.org
organization that employs hundreds of leading 1) supporting /pdf/gc100.pdf Itelectual property statement
biomedical scientists working at the forefront of investigators (transfer to non- http://www.hhmi.org/pdf/Intellectual
Sharon Brickhill their fields. In addition, through its grants with a wide http://www.hhmi.org/ profit) Property.pdf List
Assistant to General program and other activities, HHMI is helping to range of pdf/investigator- http://www.hhmi.org of general councel at HHMI
Councel enhance science education at all levels and research guide.pdf /pdf/gc200.pdf institutions:
HHMI Howard Hughs brickhil@hhmi.org maintain the vigor of biomedical science Approximately 300 interests, 2) http://www.hhmi.org/ (transfer to for- http://www.hhmi.org/about/ogc/host
Terry Medical Institute www.hhmi.org 301 215 8835 worldwide. HHMI investigators across US education No No pdf/Sharing.pdf profit) No No No No No No No No .html
The Open Science Grid is a US grid computing
infrastructure that supports scientific computing
via an open collaboration of science
researchers, software developers and
computing, storage and network providers.
Open Science Grid www.Opensciencegrig. Teragrid (described under "Other") may be NSF and Dept. of
Terry (OSG) org Kim Johnson more interesting/significant. Engergy Many No data No N/A No N/A No N/A N/A N/A N/A N/A N/A N/A
Informatics for
Integrating
Biology and the http://www.i2b2.org/abo Zak Kohane, Harvard, Brigham
Carol Bult Bedside ut/index.html Director Women's
manual of operations
CPCTR (Prostate www.prostatetissues.or available; de-identified
Mike Becich Cancer) g database available
New effort with Geisebger/Ardais.
Same strucutre for CPABC. Now
woith commerival health. Just been
funded. Who will be preparing those Funded by small
agreements? Linberg research start-up and state
institute. UPMC Will be helping them of PA. Can we
through the materials. Geis will collect tissue
source. Ardais will collect and specimens of high
annotate. Linberger checking quality quality from Partner
Subcontract of of specimens. Ardais will be using community health commercial with
Mike/J London PCABC Nancy Barker their form. network? hospital
NCI Cooperative
Identified by Group Specimen
Mark Watson Banks
CHTN -
Cooperative
Identified by Human Tissue
Mark Watson Network Bill Grizzle
Identified by CBCTR-
Mark Watson; Cooperative
Mike Becich Breast Cancer
will research Tissue Resource Sheila Palbi
Clinical
phenotypic
data
Yes --
The Autism Genetic Resource Exchange Anyone can apply, (specific to
(AGRE) was created by Cure Autism Now applications reviewd by 2 autism), and collection of
(CAN) to advance genetic research in autism (of 4) investigators on blood (which Research samples
spectrum disorders. Genetic biomaterials and board. 1) Must meet IRB is made into Access Citation handled by IRB
clinical data are obtained from families that have guidelines at institution cells lines for application: guidelines: of UCLA, and
more than one family member diagnosed with an making request, and 2) DNA
http://www.agr http://www.agr http://www.a Western
Vlad Kustanovich, Autism Spectrum Disorder. The biological must sign materials extraction).
Autism Genetic Ph.D. vlad@agre.org samples, along with the accompanying clinical transfer form. Genotype e.org/applicatio e.org/applicati gre.org/prog Institutional
Resource Exchange 323 931 6577 X31 data, are made available to AGRE-approved Cure Autism Now http://www.agre.org/bnews/ data on 356 n/researcherap on/AGREagre ram/howTo Review Board Received affiliated with NIMH
Terry (AGRE) www.agre.org Research Liaison researchers. (CAN)/ Rutgers Univ. bibcite.cfm?do=news families. N/A p.cfm ement.pdf Cite.cfm No Yes No No www.wirb.com from Vlad No Genetics Initiative
slides
and
summarie
s of
Dr. Anthony Zerhouni
Hayward presentati
Director, on and
Division for Major administrative initiative that will parallel
Roadmap Clinical track NIH awards etc; RFA not sessions
Initiative on Research released yet, may come in January. from 23
Clinical and Resources, andThe process once developed will May 05
Translational consolidate resources will make the
Dr. Robert Star, meeting;
Sciences - adoption of "gold stadards" (such as
National Center posted
Enhancing the for Research for caBIG) easier. One section of the pointers
Discipline of http://www.ncrr.nih.gov/ Resources project will address bioinformatics, NIH, National to related Well worth tracking but not
Clinical and clinicaldiscipline.asp National clinical, and translational sciences. Center for efforts likely to be a primary
Howard Trans lational www.nihroadmap.nih.g Institutes of Will result in greater discipline in Research outside of source. Howard will
Bilofsky Sciences ov Health these fields. Resources na NIH. na na monitor.
Make resources for scientists already
funded by NIGMS. 5 grants. Multi-
institutional monsters. Different
aspects of basic biology and
medicine. Pub policy, data
NIGMS "Glue validation. Infrasstructure on
Grants" - Large computational side. Info mgmt, de-
Scale http://www.nigms.nih.g id, databses. Alliance for cell
Collaborative ov/ Sean signaling. Dumps everything
Ivan Rusyn Projects funding/gluegrants.html Karsokromanian immediately. NIGMS
UK
working closely with caBIG
-- See NCRI Strategic
Framework document and
Richard Begent, draft data sharing policy
http://www.cancerinfor Sue Dubman; http://www.cancerinformati
NCRI Informatics matics.org.uk/index.htm Fiona Access clinical trials data from all UK cs.org.uk/documents.htm#
Amin Chisti Initiative l Reddington NCRN trials UK NCRI Taskforce
Provides services to faciliate
integration of data and applications to
support investigator-driven
experiments in silico; An e-Science
pilot project. More software and Academic
architecture focussed. Looked into consortium; nine
Web site. Version from 99. More industry partners
useful for software subcommittee. UK; some industry (GSK and IBM most
Amin Chisti myGrid project www.mygrid.org.uk "European Public License" support (IBM). significant)
They're gathering data on health and
lifestyle of half a million voilunteers
between 40 and 69. Lawyers and
http://www.ukbiobank.a directors. Set up as a charitable
Amin Chisti UK Biobank c.uk/ organziation UK
EUROPE
The database will See They have held Re. Material Transfer
EORTC be published in the http://www2.eur.nl/f so far half-year Agreement: We have developed
(http://www.eortc.be/)OEIC restricted public gg/pathol/index.htm annual a standard Tissue Transfer
(http://www.oeci- domain, but must From the web meetings, Agreement (At the end of
eeig.org/web_oeci/default. be freely page: discussing all deliverable 6.1)
asp) and others (see accessible for the Tissue samples workpackages Yes. Every tissue as well a Code of Conduct
http://www.eortc.be/vtb/vtb European scientific can be selected on their collecting participant (Deliverable 7.2), making Tissue
website/TuBaFrostFrame community via the and requested for developments in the project is Transfers possible between two
Set.asp). web. The website scientific medical and working out responsible for the countries in Europe. The CoC is
will be developed to research only if the the future plans way the samples are based on the home country
The storage of tissue publish and explain following conditions and coded. The central control principle. One of the main
the use of the are met: deliverables. In database only gets interests of the whole project was
will be de-centralized,
virtual tumor bank. 1. You must be addition the Only anonymous the codes and has in to find ways to when the project
at the institute where it
To enable working employed as a developed items but linked tissue no way access to is finished attract existing local
is collected. To assure
with the tissue and researcher by the are evaluated. can be actual patient data. tissue banks to join the network,
equal quality of tissue,
thereby crossing Erasmus MC. This results in exchanged. The The tissue collector is which can have very valuable
which in outcome of
European borders, 2. You must be extensive tissue samples responsible for the collections. That resulted in a rule,
scientific experiments can
a code of conduct familiar with the minutes. are linked to the proper coding of the which is also very practical to the
be compared,
will be developed by Code Proper Furthermore all following sample. Systems can whole organisation: The tissue,
standardization of the
expert health-jurists Secondary Use of deliverables are identifying be very simple like a that stays stored at the institute of
collection and storage
for research with Human Tissue shared with all information only: database with the collector until it is
methods is fundamental.
"left over" human developed by the participants. sex, age, country, automatic sample requested for experimental use,
Therefore, protocols for
The objective of the TuBaFrost project is to tissues that FMWV. They are at the initial diagnosis. numbering or the also stays under the
storage, retrieval and
Dr. W.N.M. Dinjens create an innovating virtual (networked) complies with the 3. You must be moment In addition, position of the tissue custodianship of the collector.
tracking of tissues will
(E-mail: European human frozen tumor tissue bank for various legal and able to give an preparing a histologic images in the storage system This way the collector does not
be standardised and
w.dinjens@erasmus the whole scientific community composed of ethical regulations exact description series of are available on- provides numbers give away the
mc.nl) high quality frozen tumor tissue sample implemented in all in Europe. of all planned articles in line hence the that can be linked tissue samples to a large
Dr. P.H.J. Riegman collections with a corresponding accurate participating Incentives for experiments external name "Virtual back in the local organisation dictating what to do
(E-mail: diagnosis stored in major European cancer laboratories. See for rules collecting frozen involving the tissue International Tumour Bank." database to the See FMWV with it, but the collector can decide
p.riegman@erasmus centres and universities, searchable through an and regulations tissue samples, samples. magazines and Also see FMWV patient data. The “Code Proper for himself to join or reject
mc.nl) uncomplicated query system on the Internet, Not NCI. Funded by Centralised access will re. secondary access rules and 4. The planned have been very “Code Proper Tissue resource Secondary Use requests
Mrs. Karin de Wildt which is provided with rules for access and use European commission be provided to the de- use of tissue use of the tissues experiments need involved in Secondary Use of manager is the of Human Tissue" or even use the tissue for its own
(E-mail: of the tissues complete with a European code of until November. From centrally stored material samples: will be established to be of sufficient disseminating Human Tissue" at keeper of the key. at purposes (Only the central
www.eortc.be/vtb (?) k.dewildt@erasmusm conduct to comply with the various legal and that moment on they via a central database http://www.fmwv. in dialogue with the quality to spend the our developed http://www.fmwv.nl/ When issuing tissue it http://www.fmwv.nl database must be updated). This
Changed to c.nl) ethical regulations in European countries. must have finished the containing nl/gedragscodes participating valuable tissue knowledge and gedragscodes/go will be done under Will need to compare /gedragscodes/go way even project driven highly
http://www.eortc.be/vtb/vtbweb Mrs. Monique Oomen infrastructure and open representative /goedgebruik/Co institutes to ensure samples on, which views in many edgebruik/CodePr these code numbers, FMWV “Code Proper edgebruik/CodePr valuable collections can join.
site/TuBaFrost2.asp AND (E-mail: The database will be published in the restricted shop. They are looking histologic images and Human deProperSecon smooth operation is to be decided by International and operSecondaryUs together with the Secondary Use of operSecondaryU European tissue European tissue These collections obviously have
EORTC Virtual http://www2.eur.nl/fgg/pathol/in m.oomen@erasmus public domain, but must be freely accessible for for sponsors to fill in the coded-linked patient tissue daryUseOfHum of the bank. the Tissue Bank European eOfHumanTissue. clinical data required Human Tissue" with seOfHumanTissu bank so I'm not bank so I'm not a higher threshold for issuing
Laura Tumour Bank dex.htm mc.nl) the European scientific community via the web. next two years. data. samples. N/A anTissue.pdf committee. meetings. pdf for the experiments. HIPAA for differences. e.pdf Unsure. sure. sure. tissue and in addition have
OTHER
Reflects approaches to human
Director: Myron subjects in social sciences at U
www.icpsr.umich.edu Gutmann Michigan 1. All centers 1. the PSI 1. The RFA
must share the "pilot" phase is has strict
information now complete; requirement
regarding during the pilot s for data
which proteins phase, release, as
are being materials (e.g. outlined in
considered, clones) were the URLs in
cloned, available to #9 below
crystallized, independent 2. Each
etc. to researchers center
TargetDB and distributed involved in
2. Each large by each PSI the PSI has
scale center center working a website for
has several on that protein public
See: subcontracts to 2. the next distribution
http://grants.nih.gov/gra http://www.nigms.nih.gov/Initiatives/P universities, phase of PSI of
nts/guide/rfa-files/RFA- SI/ government will have a information;
GM-05-001.html http://www.the- laboratories, centralized websites are
NIGMS Protein http://grants.nih.gov/gra scientist.com/2005/10/24/30/1 synchrotrons materials not
Structure nts/guide/rfa-files/RFA- Dr. John Norvell, http://www.nigms.nih.gov/News/Repo etc.. Data repository for regulated
Tristan Fiedler Initiative GM-05-002.html director rts/protein_structure.htm distribution expression 3. All
Indiana University and
Purdue University,
National Center for
TeraGrid is an open scientific discovery Supercomputing
infrastructure combining leadership class Applications, Oak Ridge
resources at eight partner sites to create an National Laboratory, San
integrated, persistent computational resource. Diego Supercomputer
Deployment of TeraGrid was completed in Center, Pittsburgh
September 2004, bringing over 40 teraflops of Supercomputing Center,
computing power and nearly 2 petabytes of Texas Advanced
rotating storage, and specialized data analysis Computing Center,
and visualization resources into production, University of Chicago No data --
help@teragrid.org interconnected at 10-30 gigabits/second via a Argonne National computing
Terry TeraGrid www.teragrid.org 866 336 2357 dedicated national network. NSF Laboratory resources
Eli Lilly
Standards for
Data Sharing
under the Human
Mike B. Proteome Project
• The mzData standard, which captures peaklist
data. mzData's aim is to unite the large number
of current formats (pkl's, dta's, mgf's, .....) into Insilicos Life Science
Software (mzData-
one; mzData. mzData has been released in a compatible viewer --
stable production version. mzData is already screenshot)
SIB: Aldente (support in
supported by some software providers. Other
the next release)
companies, including Bruker Daltonics, Kratos Bruker Daltonics (in next
Analytical (Shimadzu Group) and Matrix release)
Kratos (in next release)
Science, are currently implementing the mzData Thermo Electron (in next
standard. release)
Waters Corporation (in
• The mzIdent standard, which captures
next release)
parameters and results of search engines such Agilient, ABI (exploratory
as Mascot and Sequest (in addition to many phase)
Protagen
other equivalent tools). EBI/University of Gent: Annotated
• The supporting ontology that will provide Pride - PRoteomics XML
IDentificasions database Schema
classifiers for both mzData and mzIdent; this list
HUPO Bioinformatics Solutions for
of clearly defined, contextualised terms is Inc.: Peaks
Proteomics mzData
crucial for the construction of unambiguously The OpenMS Project, a
Standards software platform for v1.05:
Initiative mzData http://psidev.sourceforg worded data files. Shotgun Proteomics mzdata.xs
Mike Becich Standard e.net/ d
• The mzData standard, which captures peaklist
data. mzData's aim is to unite the large number
of current formats (pkl's, dta's, mgf's, .....) into Insilicos Life Science
Software (mzData-
one; mzData. mzData has been released in a compatible viewer --
stable production version. mzData is already screenshot)
SIB: Aldente (support in
supported by some software providers. Other
the next release)
companies, including Bruker Daltonics, Kratos Bruker Daltonics (in next
Analytical (Shimadzu Group) and Matrix release)
Kratos (in next release)
Science, are currently implementing the mzData Thermo Electron (in next
standard. release)
Waters Corporation (in
• The mzIdent standard, which captures
next release)
parameters and results of search engines such Agilient, ABI (exploratory
as Mascot and Sequest (in addition to many phase)
Protagen
other equivalent tools). EBI/University of Gent: Annotated
• The supporting ontology that will provide Pride - PRoteomics XML
IDentificasions database Schema
classifiers for both mzData and mzIdent; this list
HUPO Bioinformatics Solutions for
of clearly defined, contextualised terms is Inc.: Peaks
Proteomics mzData
crucial for the construction of unambiguously The OpenMS Project, a
Standards software platform for v1.05:
Initiative mzData http://psidev.sourceforg worded data files. Shotgun Proteomics mzdata.xs
Mike Becich Standard e.net/ms/index.html d
