Mission: To establish vibrant interactions between dermatoepidemiology investigators, large patient resource groups, pharmaceutical and device companies, and government regulatory agencies throughout North America, UK and Europe.
Specific Goals: (these lists and goals will be overlapping but should be maintained as separate areas do to the focus of the person reviewing this cooperative interactive source).
Establishing Lists of Areas of Interest:
A lists of specific areas of interest will be established : in part by data entered below. Specific sub-areas of interest will then be clarified. These
can be turned into check lists for the entries below; keeping open free entry which will need to be reviewed and when not unique entered into this list.
Linking interested individuals and groups
A directory will be established and maintained to identify investigators, whether in or out of academics. This directory will include the name and contact information for each investigator, their primary and secondary business and/or academic relationships, their primary and secondary areas of interest, as well as their expertise within each area of interest. Data Sources ; Ongoing: Funded Projects;& Unfunded projects; listing source of funding: Links to further information about investigator:
For example; Jane Smith, MD PhD, Professor of Dermatology and Director of the Dermatoepidemiology Unit at WeAreGenuses University, Major City, USA; President, ICanStratifyAnything Foundation, Minor City, USA: p: 123.234.3456 c:234.345.4567 f: 123 234.5432 email: firstname.lastname@example.org Skype name: JSmithywag Interest; Primary Melanoma, Secondary: other skin cancer, psoriasis, pruritus; Expertise: treatment responses and Vitamin D ; Data Sources: Women’s Health Cooperative Database ; patients seen at WAG, National Eczema Association. Funded project by NIAMS: Incidence of Melanoma in Green skinned Congressman in association with position taken on the Health Care Initiative ; Unfunded project: incidence of pruritus as an early clinical sign of melanoma. www.wag.edu/jsmithmdphd ; www.ICSA.org
A system will be established to sort these lists according to areas of interest and sub-sort to primary or secondary areas of interest and to identifiable areas of expertise within these groups. In addition, on plans to sub-sort by patient Sources available
Linking Patient Sources
A directory will be established identifying Patient Sources and the key players to gain access to patient related data. These will include patient support groups, large clinical practices (large multi-office HMO’s, large single specialty (dermatology) group practices, large multi-specialty group practices, government insured groups (medicare, VA, Military, etc) The general demographics of the members of these sources will be included. Whether or not the source includes patients within specific areas of interest (see below) to general population will be clarified (For example, a patient support group will only have patients with their disease or also may include patients with similar problems who have not specific support group; this would need to be clarified)
A system will be established to sort these lists according to patients with specific areas of interest, and by the demographics of the patients
Identifying Groups, Agencies, Businesses with Areas of Concern
A directory will be established identifying groups with general areas of concern. Each group will be further identify any specific questions within these areas they need addressed. Without violating any proprietary interests, they will identify ongoing projects funded and funded that they sponsor. They will identify those individuals with whom they have and have had contact. They will identify sources of funding of which they are aware for these projects. Theses funding sources may be from themselves or through other sources. Groups to be included in this directory include: Patient Support Groups, Charitable foundations, Individual Entrepreneurs, Pharmaceutical Companies, Device Companies, Government agencies involved in disease recognition and control, Government Granting agencies (this information may be obtained from publically published information), as well as administrators or health plans including insurance, military, other governmental.
Identify Funding Sources:
Establish Lists of Funding sources that cross link to the areas of interest: These sources will include: government agencies, charitable foundation , patient support groups, pharmaceutical companies, devices companies.
In addition, attempts will be made to prevent ‘hostile’ competition within the group. Thus, members will alert others when and to whom they are seeking funding, such that they can either collaborate or seek funding at different times thus increasing the chance of funding for a member during a given funding period.
Linking the groups:
The administrators of this effort will establish a system (human or virtual) which cross links investigators with investigators to groups of interests to funding groups to industry groups. When links are identified the parties will be so notified and sent email to join a Linkedin Group related to this areas of interest and sub-areas of interest. Information will also be maintained on the ADEN website and the Facebook network.
Linking with Regulatory
Guidelines will be posted concerning when regulatory agencies should be contacted about any ongoing work. These include: IRB, FDA, Researcher with Regulatory ?
Establish and Maintain literature review pertinent to each area of interest
A central site will be established for posting and updating pertinent literature references. Each linked group for a specific area of interest /sub- will be asked to post references within their area that they find that will be pertinent to that area of interest/sub-area of interest.
Uniform boilerplate protocols, source documentation, outcome assessment measures, as well as data analysis methodology for focused area of interest identified
In order to make results from studies more comparable, a group of boilerplate protocols, source documentation will be developed and standardized. These may further be modified for individual specific area of interest or sub-area of interest of investigations.