Literature DB >> 17141501

The Dutch neuromuscular database CRAMP (Computer Registry of All Myopathies and Polyneuropathies): development and preliminary data.

B G M van Engelen1, H van Veenendaal, P A van Doorn, C G Faber, J H van der Hoeven, N G Janssen, N C Notermans, I N van Schaik, L H Visser, J J G M Verschuuren.   

Abstract

Each of the various neuromuscular diseases is rare. Consequently, solid epidemiological data are not available and it is often difficult to find sufficient patients for studies. For this reason, the Dutch neuromuscular database, CRAMP (Computer Registry of All Myopathies and Polyneuropathies), was developed in 2004 by the Dutch Neuromuscular Research Support Centre, to store information on patient characteristics and diagnoses (based on Rowland and McLeod's classification) in a uniform and easily retrievable manner. Care was taken to preserve data confidentiality. It is envisaged that CRAMP will prove particularly useful for studies in which multicentre collaboration is needed to recruit a sufficiently large number of patients. More than 10,000 patients with neuromuscular diseases (4,837 female, 5,476 male) have been registered since 2004, half of whom (n=5059) have peripheral nerve disorders.

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Year:  2006        PMID: 17141501     DOI: 10.1016/j.nmd.2006.09.017

Source DB:  PubMed          Journal:  Neuromuscul Disord        ISSN: 0960-8966            Impact factor:   4.296


  16 in total

1.  Effect of Mexiletine on Muscle Stiffness in Patients With Nondystrophic Myotonia Evaluated Using Aggregated N-of-1 Trials.

Authors:  Bas C Stunnenberg; Joost Raaphorst; Hans M Groenewoud; Jeffrey M Statland; Robert C Griggs; Willem Woertman; Dick F Stegeman; Janneke Timmermans; Jaya Trivedi; Emma Matthews; Christiaan G J Saris; Bas J Schouwenberg; Gea Drost; Baziel G M van Engelen; Gert Jan van der Wilt
Journal:  JAMA       Date:  2018-12-11       Impact factor: 56.272

2.  Early onset as a marker for disease severity in facioscapulohumeral muscular dystrophy.

Authors:  Rianne J M Goselink; Karlien Mul; Caroline R van Kernebeek; Richard J L F Lemmers; Silvère M van der Maarel; Tim H A Schreuder; Corrie E Erasmus; George W Padberg; Jeffrey M Statland; Nicol C Voermans; Baziel G M van Engelen
Journal:  Neurology       Date:  2018-12-19       Impact factor: 9.910

3.  Population-based incidence and prevalence of facioscapulohumeral dystrophy.

Authors:  Johanna C W Deenen; Hisse Arnts; Silvère M van der Maarel; George W Padberg; Jan J G M Verschuuren; Egbert Bakker; Stephanie S Weinreich; André L M Verbeek; Baziel G M van Engelen
Journal:  Neurology       Date:  2014-08-13       Impact factor: 9.910

4.  Dutch myotonic dystrophy type 2 patients and a North-African DM2 family carry the common European founder haplotype.

Authors:  Marieke J H Coenen; Alide A Tieleman; Mascha M V A P Schijvenaars; Maike Leferink; Laura P W Ranum; Hans Scheffer; Baziel G M van Engelen
Journal:  Eur J Hum Genet       Date:  2011-01-12       Impact factor: 4.246

5.  Effect of aerobic exercise training and cognitive behavioural therapy on reduction of chronic fatigue in patients with facioscapulohumeral dystrophy: protocol of the FACTS-2-FSHD trial.

Authors:  Nicoline B M Voet; Gijs Bleijenberg; George W Padberg; Baziel G M van Engelen; Alexander C H Geurts
Journal:  BMC Neurol       Date:  2010-06-30       Impact factor: 2.474

6.  High disease impact of myotonic dystrophy type 2 on physical and mental functioning.

Authors:  Alide A Tieleman; Kathleen M Jenks; Joke S Kalkman; George Borm; Baziel G M van Engelen
Journal:  J Neurol       Date:  2011-04-03       Impact factor: 4.849

7.  Effects of shared medical appointments on quality of life and cost-effectiveness for patients with a chronic neuromuscular disease. Study protocol of a randomized controlled trial.

Authors:  Femke M Seesing; Gea Drost; Gert-Jan van der Wilt; Baziel G M van Engelen
Journal:  BMC Neurol       Date:  2011-08-23       Impact factor: 2.474

8.  Early stages of building a rare disease registry, methods and 2010 data from the Belgian Neuromuscular Disease Registry (BNMDR).

Authors:  Anna J Roy; Peter Van den Bergh; Philip Van Damme; Kris Doggen; Viviane Van Casteren
Journal:  Acta Neurol Belg       Date:  2014-06-24       Impact factor: 2.396

9.  Increased plasma amyloid-beta42 protein in sporadic inclusion body myositis.

Authors:  Wilson F Abdo; Tom van Mierlo; Gerald J Hengstman; H Jurgen Schelhaas; Baziel G van Engelen; Marcel M Verbeek
Journal:  Acta Neuropathol       Date:  2009-06-06       Impact factor: 17.088

10.  Guidance in social and ethical issues related to clinical, diagnostic care and novel therapies for hereditary neuromuscular rare diseases: "translating" the translational.

Authors:  Pauline McCormack; Simon Woods; Annemieke Aartsma-Rus; Lynn Hagger; Agnes Herczegfalvi; Emma Heslop; Joseph Irwin; Janbernd Kirschner; Patrick Moeschen; Francesco Muntoni; Marie-Christine Ouillade; Jes Rahbek; Christoph Rehmann-Sutter; Francoise Rouault; Thomas Sejersen; Elizabeth Vroom; Volker Straub; Kate Bushby; Alessandra Ferlini
Journal:  PLoS Curr       Date:  2013-01-10
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