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Results: 1 to 20 of 257

1.

Creating a global rare disease patient registry linked to a rare diseases biorepository database: Rare Disease-HUB (RD-HUB).

Rubinstein YR, Groft SC, Bartek R, Brown K, Christensen RA, Collier E, Farber A, Farmer J, Ferguson JH, Forrest CB, Lockhart NC, McCurdy KR, Moore H, Pollen GB, Richesson R, Miller VR, Hull S, Vaught J.

Contemp Clin Trials. 2010 Sep;31(5):394-404. doi: 10.1016/j.cct.2010.06.007. Epub 2010 Jul 8.

PMID:
20609392
[PubMed - indexed for MEDLINE]
Free PMC Article
2.

Better access to information about clinical trials.

McCray AT.

Ann Intern Med. 2000 Oct 17;133(8):609-14.

PMID:
11033590
[PubMed - indexed for MEDLINE]
3.

Driving interest in consolidating resources for the creation of a global rare disease patient registry.

Rubinstein YR, Groft SC.

Contemp Clin Trials. 2010 Sep;31(5):393. doi: 10.1016/j.cct.2010.07.002. Epub 2010 Jul 7. No abstract available.

PMID:
20603228
[PubMed - indexed for MEDLINE]
4.

A model for the European platform for rare disease registries.

Vittozzi L, Gainotti S, Mollo E, Donati C, Taruscio D.

Public Health Genomics. 2013;16(6):299-304. doi: 10.1159/000355935. Epub 2014 Feb 3.

PMID:
24503590
[PubMed - indexed for MEDLINE]
5.

The NCI All Ireland Cancer Conference.

Johnston PG, Daly PA, Liu E.

Oncologist. 1999;4(4):275-277.

PMID:
10545862
[PubMed - as supplied by publisher]
Free Article
6.

[Registries for clinical trials -- a critical stock-taking].

Bestehorn K, Hönig R, Clemens N, Kirch W.

Med Klin (Munich). 2006 Feb 15;101(2):120-6. German.

PMID:
16501909
[PubMed - indexed for MEDLINE]
7.

American Society of Clinical Oncology policy statement: oversight of clinical research.

American Society of Clinical Oncology.

J Clin Oncol. 2003 Jun 15;21(12):2377-86. Epub 2003 Apr 29.

PMID:
12721281
[PubMed - indexed for MEDLINE]
8.

Establishment of a web-based registry for rare (orphan) pediatric lung diseases in the United Kingdom: the BPOLD registry.

Laverty A, Jaffé A, Cunningham S.

Pediatr Pulmonol. 2008 May;43(5):451-6. doi: 10.1002/ppul.20783. Erratum in: Pediatr Pulmonol. 2009 Jun;44(6):627.

PMID:
18383113
[PubMed - indexed for MEDLINE]
9.

National Mesothelioma Virtual Bank: a standard based biospecimen and clinical data resource to enhance translational research.

Amin W, Parwani AV, Schmandt L, Mohanty SK, Farhat G, Pople AK, Winters SB, Whelan NB, Schneider AM, Milnes JT, Valdivieso FA, Feldman M, Pass HI, Dhir R, Melamed J, Becich MJ.

BMC Cancer. 2008 Aug 13;8:236. doi: 10.1186/1471-2407-8-236.

PMID:
18700971
[PubMed - indexed for MEDLINE]
Free PMC Article
10.

Characteristics of clinical trials registered in ClinicalTrials.gov, 2007-2010.

Califf RM, Zarin DA, Kramer JM, Sherman RE, Aberle LH, Tasneem A.

JAMA. 2012 May 2;307(17):1838-47. doi: 10.1001/jama.2012.3424.

PMID:
22550198
[PubMed - indexed for MEDLINE]
11.

Advocacy groups and their role in rare diseases research.

Dunkle M, Pines W, Saltonstall PL.

Adv Exp Med Biol. 2010;686:515-25. doi: 10.1007/978-90-481-9485-8_28. Review.

PMID:
20824463
[PubMed - indexed for MEDLINE]
12.

[CroDiab NET--electronic diabetes registry].

Poljicanin T, Pavlić-Renar I, Metelko Z.

Acta Med Croatica. 2005;59(3):185-9. Croatian.

PMID:
16095190
[PubMed - indexed for MEDLINE]
13.

Expanding research to provide an evidence base for nutritional interventions for the management of inborn errors of metabolism.

Camp KM, Lloyd-Puryear MA, Yao L, Groft SC, Parisi MA, Mulberg A, Gopal-Srivastava R, Cederbaum S, Enns GM, Ershow AG, Frazier DM, Gohagan J, Harding C, Howell RR, Regan K, Stacpoole PW, Venditti C, Vockley J, Watson M, Coates PM.

Mol Genet Metab. 2013 Aug;109(4):319-28. doi: 10.1016/j.ymgme.2013.05.008. Epub 2013 May 23.

PMID:
23806236
[PubMed - indexed for MEDLINE]
14.

The International LAM Registry: a component of an innovative web-based clinician, researcher, and patient-driven rare disease research platform.

Nurok M, Eslick I, Carvalho CR, Costabel U, D'Armiento J, Glanville AR, Harari S, Henske EP, Inoue Y, Johnson SR, Lacronique J, Lazor R, Moss J, Ruoss SJ, Ryu JH, Seyama K, Watz H, Xu KF, Hohmann EL, Moss F.

Lymphat Res Biol. 2010 Mar;8(1):81-7. doi: 10.1089/lrb.2009.0028.

PMID:
20235890
[PubMed - indexed for MEDLINE]
15.

Networking for rare diseases: a necessity for Europe.

Aymé S, Schmidtke J.

Bundesgesundheitsblatt Gesundheitsforschung Gesundheitsschutz. 2007 Dec;50(12):1477-83. Review.

PMID:
18026888
[PubMed - indexed for MEDLINE]
16.

A modular approach to disease registry design: successful adoption of an internet-based rare disease registry.

Bellgard MI, Macgregor A, Janon F, Harvey A, O'Leary P, Hunter A, Dawkins H.

Hum Mutat. 2012 Oct;33(10):E2356-66. doi: 10.1002/humu.22154. Epub 2012 Jul 2.

PMID:
22753342
[PubMed - indexed for MEDLINE]
17.

Patient registries: utility, validity and inference.

Richesson R, Vehik K.

Adv Exp Med Biol. 2010;686:87-104. doi: 10.1007/978-90-481-9485-8_6. Review.

PMID:
20824441
[PubMed - indexed for MEDLINE]
18.

The German Acromegaly Registry: description of the database and initial results.

Reincke M, Petersenn S, Buchfelder M, Gerbert B, Skrobek-Engel G, Franz H, Lohmann R, Quabbe HJ.

Exp Clin Endocrinol Diabetes. 2006 Oct;114(9):498-505.

PMID:
17115347
[PubMed - indexed for MEDLINE]
19.

Electronic patient registries improve diabetes care and clinical outcomes in rural community health centers.

Pollard C, Bailey KA, Petitte T, Baus A, Swim M, Hendryx M.

J Rural Health. 2009 Winter;25(1):77-84. doi: 10.1111/j.1748-0361.2009.00202.x.

PMID:
19166565
[PubMed - indexed for MEDLINE]
20.

Web resources for rare auto-inflammatory diseases: towards a common patient registry.

Touitou I, Hentgen V, Koné-Paut I; French Reference Centre for Auto-Inflammatory Diseases.

Rheumatology (Oxford). 2009 Jun;48(6):665-9. doi: 10.1093/rheumatology/kep056. Epub 2009 Mar 25.

PMID:
19321516
[PubMed - indexed for MEDLINE]
Free Article

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