Tabula rasa
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Tabula Rasa. J. Russell Teagarden Medical & Scientific Affairs. Phone 203.744.0100 Fax 203.798.2757 Address 55 Kenosia Avenue, Danbury, CT 06810. rarediseases.org. Tabula as “Center”. Center Divisions Research Intelligence Education / Publication Scientific Affairs Invention.

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Tabula Rasa

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Tabula rasa

Tabula Rasa

J. Russell Teagarden

Medical & Scientific Affairs

Phone 203.744.0100Fax 203.798.2757

Address55 Kenosia Avenue, Danbury, CT 06810

rarediseases.org


Tabula as center

Tabula as “Center”

Center Divisions

  • Research

  • Intelligence

  • Education / Publication

  • Scientific Affairs

  • Invention

Center Mission

  • Imagine

  • Invent

  • Aspire

  • Inspire

  • Discover

  • Develop

  • Inform

  • Educate

  • Advocate


Research

Research

  • Primary research

    • Clinical/economic/humanistic

    • Social policies/insurance schemes/legal precedents/cultural inputs

    • Patient reported outcome studies / analyses / case reports

  • Secondary research

    • Synthesis of primary research (eg, meta-analysis)

    • Synthesis of historical trends

    • Synthesis of laws/regs/policies

  • Research policy in rare disease

NORD Research Consortium


Nord research consortium

NORD Research Consortium

  • Comprised of rare disease patient groups

  • Direct research involvement

  • Research policy for rare disease

  • Evaluation of research plans for proposed treatments for rare diseases

  • Education on translational research in rare disease

  • Responses to research events in rare disease


Intelligence

Intelligence

  • Surveillance

    • New drugs

    • New developments

    • New guidelines

    • New policies/laws/regs

    • New payment methods

    • New dx categories

    • Media trends

  • Tech Assessments

    • Develop

    • Curate

    • Distribute

  • Alerts

    • Member groups

    • Corporate Council

    • Press

    • Other constituencies

  • Access Issue Evaluations / Investigations

  • Responses to scientific and clinical inquiries

    • Members

    • Partners

    • Gov’t

    • Press


Education publication

Education/Publication

  • Research papers

  • Policy/Advocacy pubs

    • Academic journals

    • Consumer media

    • Independent media

  • Book chapters/books

  • Special journal issues

  • Videos

  • Podcasts

  • Databases

  • Curriculum for health professions

    • Courses

    • Course segments

  • Teaching

    • Onsite

    • Video / audio media

  • Patient education

  • Conferences/seminars/symposia/webinars/retreats


Scientific affairs

Scientific Affairs

  • Clinical program development

  • Policy/communications development

  • Collaborations

    • Health care providers

    • Member organizations

    • Industry partners

    • Gov’t agencies

    • CROs

    • Academia

    • Professional organizations

    • Foundations

  • Forums with rare disease groups / payers

  • Advisory committees

  • Scholar-in-Residence

  • Visiting scholar

  • Artist-in-Residence

  • Health professions education and training

    • Student rotations

    • Fellowships

    • Intern programs

  • Private-public initiatives


Invention

Invention

  • Convening and inspiring far-ranging arrays of groups to develop new ways of thinking about and attacking rare disorders

    • Futurists

    • Scientists, clinicians, patients, families

    • Artists, writers, filmmakers

    • Military, anthropologists, philosophers, sociologists, engineers, etc.

  • Creating/facilitating imaginative, innovative, and unconventional initiatives

  • Tracking unconventional and imaginative research and care practices worldwide

  • Establishing and managing audacious and inspiring challenges

  • Developing and managing crowd-sourcing mechanisms towards imaginative and daring ideas

    • Research

    • Care


Potential initiatives for corporate council involvement

Potential Initiatives for Corporate Council Involvement

  • Research opportunities through Consortium

  • Evaluation of early research plans through Consortium

  • Forums with rare disease groups and payers

  • Surveillance /alerts /inquiries

  • Access evaluations and investigations

  • Seminars / symposia / webinars / retreats


If only

If Only

  • Seed funding for Consortium development and grants for individual research projects

  • Subscription funding to support intelligence services

  • Contributions to a fund that will support access issue investigation and evaluation work

  • Grants for forums with member groups or payers

  • Grants for individual seminars / symposia / webinars / retreats


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