E-viri
Odprti dostop
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Prakash, Siddharth K; Lugo-Ruiz, Soniely; Rivera-Dávila, Michelle; Rubio, Jr, Nunilo; Shah, Avni N; Knickmeyer, Rebecca C; Scurlock, Cindy; Crenshaw, Melissa; Davis, Shanlee M; Lorigan, Gary A; Dorfman, Aaron T; Rubin, Karen; Maslen, Cheryl; Bamba, Vaneeta; Kruszka, Paul; Silberbach, Michael
American journal of medical genetics. Part C, Seminars in medical genetics, March 2019, Letnik: 181, Številka: 1Journal Article
To address knowledge gaps about Turner syndrome (TS) associated disease mechanisms, the Turner Syndrome Society of the United States created the Turner Syndrome Research Registry (TSRR), a patient-powered registry for girls and women with TS. More than 600 participants, parents or guardians completed a 33-item foundational survey that included questions about demographics, medical conditions, psychological conditions, sexuality, hormonal therapy, patient and provider knowledge about TS, and patient satisfaction. The TSRR platform is engineered to allow individuals living with rare conditions and investigators to work side-by-side. The purpose of this article is to introduce the concept, architecture, and currently available content of the TSRR, in anticipation of inviting proposals to utilize registry resources.
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Faktor vpliva
Dostop do baze podatkov JCR je dovoljen samo uporabnikom iz Slovenije. Vaš trenutni IP-naslov ni na seznamu dovoljenih za dostop, zato je potrebna avtentikacija z ustreznim računom AAI.
Leto | Faktor vpliva | Izdaja | Kategorija | Razvrstitev | ||||
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JCR | SNIP | JCR | SNIP | JCR | SNIP | JCR | SNIP |
Baze podatkov, v katerih je revija indeksirana
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Povezave do osebnih bibliografij avtorjev | Povezave do podatkov o raziskovalcih v sistemu SICRIS |
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Vir: Osebne bibliografije
in: SICRIS
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