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Parent, Advocate, ResearcherJannine D. Cody, PhDConference on Clinical Research for Rare DiseasesSeptember 21, 2010Parent, Advocate, Researcher(the view from my parachute)Jannine D. Cody, Ph.D.Founder& PresidentAssociate ProfessorDept. of PediatricsScientific DirectorCHART Center1985 Cleft palate Metatarsusadductus Bright-eyed Alert“She has this – it is really rare”“They are probably the most severelyafflicted among carriers of chromosomeabnormalities. They maintain the frog likeposition observed in infants and are reducedto an entirely vegetative, bedridden life.”
Parent, Advocate, ResearcherJannine D. Cody, PhDConference on Clinical Research for Rare DiseasesSeptember 21, 2010me! Numerous specialists HealingHealing problems At 2 yr. – poor growth At 3 yr. NeurologistHearing
Parent, Advocate, ResearcherJannine D. Cody, PhDConference on Clinical Research for Rare DiseasesSeptember 21, 20101989Find other parentsThe Chromosome 18 Registry& Research SocietyHelp individuals with chromosome 18abnormalities overcome the obstacles they faceso they might lead healthy and productive lives.The Syndromes of Chromosome 18Ring 1818q-18q18p-18pTetrasomy 18p
Parent, Advocate, ResearcherJannine D. Cody, PhD1991 – 1997Graduate School of Biomedical SciencesUTHSCSAMay 1997The Chromosome 18 RegistryAccomplishing our mission through:ServiceConferences (US, Australia & Europe)Regional Get-togethersWebsite / listservs /Facebook etc.EdEducationiCongressional Testimony – 2 yearsAppropriations report language – 10 yearsMember presentations to - Anyone!ResearchThe Chromosome 18 Clinical Research Center 5.1 Million in research fundingConference on Clinical Research for Rare DiseasesSeptember 21, 2010
Parent, Advocate, ResearcherJannine D. Cody, PhD2 Employees 2400 Families4% Management & fundraisingThe Chromosome 18Clinical Research Center 7 Investigators with % effort 12 volunteer investigators 8 staff 400 participants Genotyped w/ 2 Kb resolution 31 publicationsConference on Clinical Research for Rare DiseasesSeptember 21, 2010
Parent, Advocate, ResearcherJannine D. Cody, PhDConference on Clinical Research for Rare DiseasesSeptember 21, 2010Team 18PartnershipThe Registry Conferences MemberM bcommunication “Lobbying” FundraisingThe Research Center Human Participants BenchB h researchh Clinical research Expert collaborators Data analysis
Parent, Advocate, ResearcherJannine D. Cody, PhDConference on Clinical Research for Rare DiseasesSeptember 21, 2010The Google RulesFrom “What Would Google Do?” by Jeff JarvisInstitutionsThe massesA fundamental change in the balance of powerThe Google RulesFrom “What Would Google Do?” by Jeff Jarvis Customers are in charge People can find each other Mass market is dead,, now mass of niche markets Markets are conversations Product scarcity no longer guarantees profits Market premium comes from collaboration Success is based on networks and platforms Ownership is no longer key.
Parent, Advocate, ResearcherJannine D. Cody, PhD Customers are in chargeIncreased connectivity: Customers have choicesLocality not important Instant speakers platform Crowd (fans or enemies) Companies that cede control win People can find each otherIncreased connectivity: 6 degrees of separation People can stay in touch More acquaintances Longer period of time Kindred spirits are easily found The mass market is dead,now a mass of niche marketsReleased from AtomsNo longer important to predict the next big hit Self publishing Self recording Self marketingConference on Clinical Research for Rare DiseasesSeptember 21, 2010
Parent, Advocate, ResearcherJannine D. Cody, PhD Markets are conversationsMarketing is out and conversations are inOld Model:Professionals pproduced amateursconsumedNew Model:Let customers do the work and learnfrom it. Product scarcityno longer guarantees profitsIncreased connectivity: The only store in town, but not theonly store that is accessible. Locality is not the key to success Market premiumcomes from collaborationIncreased connectivity: Open sourcingBritannica WikipediaConference on Clinical Research for Rare DiseasesSeptember 21, 2010
Parent, Advocate, ResearcherJannine D. Cody, PhDConference on Clinical Research for Rare DiseasesSeptember 21, 2010 Success is based onnetworks and platformsAcme Widgets Ownership is no longer keyIncreased connectivity:p Challengeg Goldcorp Released geological data1996 - 53,000 oz @ 360/oz2001 - 504 oz @ 59/ozThe Google RulesFrom “What Would Google Do?” by Jeff JarvisInstitutionsThe massesA fundamental change in the balance of power.
Parent, Advocate, ResearcherJannine D. Cody, PhDWhat do the Google Rules mean tothe Rare Disease Community?Rare is no longer second class!Rare Hard to find Isolated Without a collective voiceRare Focused constituency Informed participantsWWGD for the Rare DiseaseResearch Community?Phenotype rules! genotyping is so last centuryPhenotypes are not dichotomousAge of onsetSeverityLevels of XAssociated findingsNatural history (or unnatural history)WWGD for the Rare DiseaseResearch Community? Participant access to their own data Participants can update their own data Participants can query the data set to getanonymized data Participants have interactive platform(a private and secret Facebook page)Conference on Clinical Research for Rare DiseasesSeptember 21, 2010
Parent, Advocate, ResearcherJannine D. Cody, PhDConference on Clinical Research for Rare DiseasesSeptember 21, 2010What Can This Meanfor Researchers? You cede control Extend your eyes and ears Increased understanding meansincreased involvementWhat Can This Meanfor Advocates? Focused on the things that matter to families Better understanding of the condition Accelerate the race for a cureThe World Congress on ChromosomeAbnormalitiesJune 2004San Antonio, Texas
Parent, Advocate, ResearcherJannine D. Cody, PhDConference on Clinical Research for Rare DiseasesSeptember 21, 2010Us!We have a long way to go!R01 Summary Statements from June 201018q-textbookElizabeth
Parent, Advocate, ResearcherJannine D. Cody, PhDRecommended ReadingWhat Would Google Do? By Jeff JarvisThe World is Flat by Thomas L. FriedmanThe Long Tail by Chris AndersonThe Black Swan by Nassim Nicholas TalebWith future paylines at 3%, you better read:Rich Dan Poor Dad by Robert Kiyosaki andSharon LechterConference on Clinical Research for Rare DiseasesSeptember 21, 2010
Self marketing. Parent, Advocate, Researcher Conference on Clinical Research for Rare Diseases Jannine D. Cody, PhD September 21, 2010 Markets are . Rich Dan Poor Dad by Robert Kiyosaki and Sharon Lechter. Title: Microsoft PowerPoint - Cody CCRRD 9-2010 [Compatibility Mode]
