Sanfilippo syndrome registry project and natural history studies: an example of patients, parents and researchers collaborating for a cure

Jill Wood; Stuart Siedman; Jennifer Siedman; Paul Levy; Kyle Brown; Kim McBride; Kevin Flanigan; Raquel Marques; Arleta Feldman; Robert PleHcha; Sean Ekins

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Sanfilippo syndrome registry project and natural history studies: an example of patients, parents and researchers collaborating for a cure

机译：Sanfilippo综合征注册项目和自然史研究：患者，父母和研究人员合作治疗的一个例子

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《Orphanet journal of rare diseases》 |2014年第s1期|共页
作者
Jill Wood; Stuart Siedman; Jennifer Siedman; Paul Levy; Kyle Brown; Kim McBride; Kevin Flanigan; Raquel Marques; Arleta Feldman; Robert PleHcha; Sean Ekins;
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中图分类全身性疾病;
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1. Experiences from setting up a 5 year longitudinal, prospective, natural history study of patients with Sanfilippo syndrome types C or D (MPS IIIC or MPS IIID) [J] . Levy Paul A., Wood Jill Molecular genetics and metabolism . 2015,第2期

机译：对Sanfilippo综合征C型或D型（MPS IIIC或MPS IIID）患者进行为期5年的纵向，前瞻性，自然史研究的经验
2. CANTU SYNDROME NATURAL HISTORY STUDIES: CLINICAL INVESTIGATIONS ON 18 PATIENTS AND REPORT ON INTERNATIONAL REDCAP REGISTRY DATA ON 58 PATIENTS [J] . Grange Dorothy K., Singh Gautam K., Nichols Colin G., American journal of medical genetics, Part A . 2018,第6期

机译：Cantu综合征自然历史研究：18名患者的临床调查和关于58名患者的国际红皮注册数据报告
3. Observational Prospective Natural History of Patients with Sanfilippo Syndrome Type B [J] . Chester B. Whitley, Maureen Cleary, Karl Eugen Mengel, The Journal of pediatrics . 2018,第期

机译：Sanfilippo综合征患者的观察前瞻性自然史B
4. PARENT Joint Action: Increasing the Added Value of Patient Registries in a Cross- Border Setting [C] . Matic Meglic, Persephone Doupi, Ivan Pristas, MEDINFO . 2013

机译：父母联合行动：增加跨境环境中患者注册表的附加值
5. Patterns and natural history of radiographically defined osteoarthritis in a registry of women. [D] . Cerhan, James Robert. 1993

机译：在女性登记册中，影像学确定的骨关节炎的样式和自然史。
6. Sanfilippo syndrome registry project and natural history studies: an example of patients parents and researchers collaborating for a cure [O] . Jill Wood, Stuart Siedman, Jennifer Siedman, 2014

机译：Sanfilippo综合征注册项目和自然史研究：患者父母和研究人员合作寻求治疗的例子
7. Sanfilippo syndrome registry project and natural history studies: an example of patients, parents and researchers collaborating for a cure [O] . Jill Wood, Stuart Siedman, Jennifer Siedman, 2014

机译：Sanfilippo综合征注册项目和自然史研究：患者，父母和研究人员合作寻求治疗的例子
8. CAPD (Continuous Ambulatory Peritoneal Dialysis) Patient Registry: Report on Patient Data in Pilot Study for the CAPD Patient Registry - January 1, 1981 to March 31, 1981 [R] . Pyle, W. K. , Hiatt, M. P. , Grant, J. E. 1981

机译：CapD（持续性非卧床腹膜透析）患者登记处：CapD患者登记处试点研究中的患者数据报告 - 1981年1月1日至1981年3月31日

Sanfilippo syndrome registry project and natural history studies: an example of patients, parents and researchers collaborating for a cure

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