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Barriers to Rare Disease Research
Rights Promoting Research Registries Research Models Research Model 1: Recessive Disorder Research Model 2: Chromosomal Disorder Research Model 3: Dominant

8 KB (1,061 words) - 16:40, 2 August 2018
Getting an ICD-9 code added for your condition
populations it may affect--in this part the group should provide any research data that researchers may have and can also address the fact that the LACK of specific

2 KB (262 words) - 16:14, 26 February 2014
Overview (section Research and Data Analysis (DAO, GA?))
This is an unfinished page. Please check back later. The following is a global overview of the PEER process. Both GA/PA and DAO's steps are covered in

4 KB (482 words) - 18:35, 23 January 2015
Disease Advocacy Organization (DAO) Manual (section Research & Data)
or other sensitive data? How do we respect diverse opinions about data sharing within our communities? How do we engage in research with our communities

54 KB (8,126 words) - 16:52, 11 February 2015
Disease Advocacy Organization(DAO) Manual (section Research & Data)
The following is the overview your DAO would have to take to successfully setup and launch a White Label Package connected through the PEER portal To be

1 KB (76 words) - 16:00, 16 December 2014
Biobank and Registry External Relations (section Making Data and Samples Available to Researchers)
co-authorship for data or sample access. Data/sample acknowledgement policies should be explained to investigators prior to release of data or samples, and

19 KB (2,693 words) - 17:03, 26 February 2014
Genetic Alliance BioBank
Rights Promoting Research Registries Research Models Research Model 1: Recessive Disorder Research Model 2: Chromosomal Disorder Research Model 3: Dominant

6 KB (866 words) - 06:25, 15 September 2021
Registries (section How Will You Collect Data and/or Samples?)
of Rights Promoting Research Research Models Research Model 1: Recessive Disorder Research Model 2: Chromosomal Disorder Research Model 3: Dominant Disorder

6 KB (827 words) - 13:50, 8 October 2020
Educating Membership about Research
Rights Promoting Research Registries Research Models Research Model 1: Recessive Disorder Research Model 2: Chromosomal Disorder Research Model 3: Dominant

5 KB (856 words) - 14:37, 12 November 2014
Blood and Tissue Banks
Rights Promoting Research Registries Research Models Research Model 1: Recessive Disorder Research Model 2: Chromosomal Disorder Research Model 3: Dominant

9 KB (1,294 words) - 14:53, 4 February 2016
Consumer Medical Information
Center offers educational publications, answers questions, and conducts research in this very important field. Boston University School of Public Health

5 KB (589 words) - 17:58, 5 March 2014
BioBanks
collection, storage, and distribution of biological samples and clinical data for research purposes. Phone: 202.966.5557 x201 Email: sterry@geneticalliance.org

3 KB (239 words) - 14:51, 4 February 2016
Research Model 1: Recessive Disorder (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) - 16:59, 26 February 2014
Funding Research by Others (section Evaluating Research Proposals)
Rights Promoting Research Registries Research Models Research Model 1: Recessive Disorder Research Model 2: Chromosomal Disorder Research Model 3: Dominant

5 KB (716 words) - 16:28, 26 February 2014
Registry and Biobank Ethics and Governance (section Research Ethics and Stewardship)
biobank, you are conducting a research study, and research ethics are an important consideration. Broadly, each research study must consider the following:

9 KB (1,314 words) - 17:04, 26 February 2014
Orphan Drug Application
Rights Promoting Research Registries Research Models Research Model 1: Recessive Disorder Research Model 2: Chromosomal Disorder Research Model 3: Dominant

12 KB (1,915 words) - 16:30, 26 February 2014
Promoting Research (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) - 16:29, 26 February 2014
Facilitating Quality Research
Rights Promoting Research Registries Research Models Research Model 1: Recessive Disorder Research Model 2: Chromosomal Disorder Research Model 3: Dominant

6 KB (928 words) - 16:28, 26 February 2014
Research Model 2: Chromosomal Disorder
Consumers and Researchers Educating Membership about Research Facilitating Quality Research Funding Research by Others Getting Needs onto the Research Agenda

4 KB (544 words) - 17:00, 26 February 2014
Donations
bolster their economy and research, but it is also a bit short sighted to think that they can’t or shouldn’t aggressively support research in their 10x the size

37 KB (6,142 words) - 14:42, 22 June 2018