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Getting a Biobank or Registry Started (section Advocacy Organizations and Research Initiatives)
biobank, it is important to develop a research study design. Your study design will be influenced by the research question(s) you are trying to answer.

13 KB (1,925 words) - 17:03, 26 February 2014
Registry Questionnaires (section Registry Questionnaire Design and Data Standardization)
likelihood that data collected today will be compatible with data collected a few years from now, and will facilitate pooling of data between related registries

5 KB (652 words) - 17:05, 26 February 2014
Biobank Sample Collection
direct the research being done on their disease or condition of interest. Well-characterized biological samples are a very valuable research tool. However

10 KB (1,352 words) - 14:40, 25 March 2022
Attending Professionals' Annual Meetings
In the case of a research meeting such as the Society of Investigative Dermatology meeting, you would encourage members of your research advisory board or

12 KB (1,863 words) - 16:36, 26 February 2014
Defining Our Terms (section Individuals Involved in Research)
involved in research, sometimes referred to as "subjects." That terminology reduces the individual to little more than a laboratory specimen or data point.

3 KB (441 words) - 03:30, 21 November 2023
Biobank and Registry Financial Management
Database fees – These may include fees to create records, fees for querying, or data use fees. Sample collection costs – These may include collection kits and

5 KB (777 words) - 17:03, 26 February 2014
Promoting Research on a Condition (section Getting Research Started on PXE)
Consumers and Researchers Educating Membership about Research Facilitating Quality Research Funding Research by Others Getting Needs onto the Research Agenda

5 KB (752 words) - 16:58, 26 February 2014
Assistive Technology
800.IBM.4YOU National Assistive Technology Research Institute (NATRI) Conducts assistive technology research and helps to move those findings into practice

3 KB (372 words) - 18:07, 5 March 2014
Creating a Natural History Survey
Diseases Research (ORDR) to see if they can offer guidance on building a database that complies with recognized standards for this kind of data collection

7 KB (1,035 words) - 16:27, 26 February 2014
Social Networking
have about Smart Patients is that, like Facebook, it does share anonymized data with third parties without the consent of members: https://www.smartpatients

34 KB (5,620 words) - 15:15, 1 August 2018
FARA Patient Registry Q & A
with FA to participate in clinical research studies or trials. All researchers who would like to request registry data will fill out an application to FARA

6 KB (996 words) - 19:08, 7 May 2014
Accessibility of Tools (section Does the tool itself collect data?)
tool addresses conditions that are relevant to your target audience. Do research and speak with health care professionals in your area so you include appropriate

8 KB (1,062 words) - 17:19, 26 February 2014
FARA Q & A
with FA to participate in clinical research studies or trials. All researchers who would like to request registry data will fill out an application to FARA

6 KB (996 words) - 19:06, 7 May 2014