URL: http://rarediseasesnetwork.epi.usf.edu/STAIR/professional/register/index.htm
Proper Citation: RDCRN Patient Contact Registry (RRID:SCR_004369)
Description: A portal specifically for patients (and their families) with sterol and other related disorders where they can register themselves with STAIR in order to be contacted in the future about clinical research opportunities and updated on the progress of the STAIR research projects. An online Registry form exists for all the BVMC disorders currently being studied.
Synonyms: STAIR Contact Registry, Rare Diseases Clinical Research Network Patient Contact Registry
Resource Type: patient registry, people resource
Keywords: sterol, patient registry, rare disease, cerebrotendinous xanthomatosis, mevalonic aciduria, hyperimmunoglobulinemia d with periodic fever syndrome, niemann-pick disease type c, sitosterolemia, sjogren-larsson syndrome, smith-lemli-opitz syndrome
Related Condition: Cerebrotendinous Xanthomatosis, Mevalonic Aciduria, Hyperimmunoglobulinemia D with Periodic Fever Syndrome, Niemann-Pick Disease Type C, Sitosterolemia, Sjogren-Larsson Syndrome, Smith-Lemli-Opitz Syndrome
Funding: National Institutes of Health
Availability: Free and anonymous for patients
Resource Name: RDCRN Patient Contact Registry
Resource ID: SCR_004369
Expand Allis affiliated with |
|
is affiliated with |
We found {{ ctrl2.mentions.all_count }} mentions in open access literature.
We have not found any literature mentions for this resource.
We are searching literature mentions for this resource.
Most recent articles:
{{ mention._source.dc.creators[0].familyName }} {{ mention._source.dc.creators[0].initials }}, et al. ({{ mention._source.dc.publicationYear }}) {{ mention._source.dc.title }} {{ mention._source.dc.publishers[0].name }}, {{ mention._source.dc.publishers[0].volume }}({{ mention._source.dc.publishers[0].issue }}), {{ mention._source.dc.publishers[0].pagination }}. (PMID:{{ mention._id.replace('PMID:', '') }})
Check
for resource mentions.
A list of researchers who have used the resource and an author search tool
Find mentions based on location
{{ ctrl2.mentions.errors.location }}
A list of researchers who have used the resource and an author search tool. This is available for resources that have literature mentions.
No rating or validation information has been found for RDCRN Patient Contact Registry.
No alerts have been found for RDCRN Patient Contact Registry.
Source: SciCrunch Registry (RRID:SCR_005400)
Description: Interactive portal for finding and submitting biomedical resources. Resources within SciCrunch have assigned RRIDs which are used to cite resources in scientific manuscripts. SciCrunch Registry, formerly NIF Registry, provides resources catalog. Allows to add new resources. Allows edit existing resources after registration. Curators are tasked with identifying and registering resources, examining data, writing configuration files to index and display data and keeping contents current.
URL: https://rrid.site/rin/sources/SCR_005400
