Current dystrophic epidermolysis bullosa research does not match research needs perceived by patients and clinicians

Journal of the American Academy of Dermatology

Volumn 71, Issue 5, 2014, Pages 1008-1011

  Davila Seijo, Paula ^a   Hernández Martín, Ángela ^b   Morcillo Makow, Evanina ^c   Rajan, Catriona ^d   García Doval, Ignacio ^a,e  

^a HOSPITAL MONTECELO   (Spain)

^b HOSPITAL INFANTIL UNIVERSITARIO NIÑO JESÚS   (Spain)

^c Dystrophic Epidermolysis Bullosa Research Association   (Spain)

^d UNIVERSITY OF NOTTINGHAM   (United Kingdom)

^e Research Unit   (Spain)

Author keywords

[No Author keywords available]

Indexed keywords

ALLANTOIN; ISOTRETINOIN; POLYPHENON E; RECOMBINANT GRANULOCYTE COLONY STIMULATING FACTOR; TETRACYCLINE; THYMOSIN BETA4; TRIMETHOPRIM;

ALLOGENEIC FIBROBLAST CELL THERAPY; ALLOGENEIC HEMATOPOIETIC STEM CELL TRANSPLANTATION; ALLOGENEIC STEM CELL TRANSPLANTATION; ANTIBIOTIC THERAPY; BONE MARROW TRANSPLANTATION; CELL THERAPY; CLINICAL RESEARCH; CONTROL STRATEGY; EPIDERMOLYSIS BULLOSA DYSTROPHICA; FIBROBLAST; GENE TRANSFER; HONEY; HUMAN; HYDROCOLLOID; HYDROGEL; LETTER; LONG TERM CARE; MESENCHYMAL STEM CELL TRANSPLANTATION; OUTCOME ASSESSMENT; PAIN; PRIORITY JOURNAL; PRURITUS; RANDOMIZED CONTROLLED TRIAL (TOPIC); REGISTER; RESEARCH PRIORITY; SKIN CANCER; STEM CELL TRANSPLANTATION; SURGICAL MESH; SYNDACTYLY; TISSUE ENGINEERING; WOUND; WOUND CARE; WOUND DRESSING; HEALTH PERSONNEL ATTITUDE; MEDICAL RESEARCH; NEEDS ASSESSMENT; PATIENT PREFERENCE;

ATTITUDE OF HEALTH PERSONNEL; BIOMEDICAL RESEARCH; EPIDERMOLYSIS BULLOSA DYSTROPHICA; HUMANS; NEEDS ASSESSMENT; PATIENT PREFERENCE; RANDOMIZED CONTROLLED TRIALS AS TOPIC;

EID: 84922480036     PISSN: 01909622     EISSN: 10976787     Source Type: Journal    
DOI: 10.1016/j.jaad.2014.05.038     Document Type: Article

References (5)

1. Liberati A. Need to realign patient-oriented and commercial and academic research. Lancet 2011;378:1777-8.
2. Davila-Seijo P, Hernandez-Martin A, Morcillo-Makow E, Lucas R, Dominguez E, Romero N, et al. Prioritization of therapy uncertainties in dystrophic epidermolysis bullosa: where should research direct to? An example of priority setting partnership in very rare disorders. Orphanet J Rare Dis 2013;8:61.
3. World Heath Organization. International clinical trials registry platform. Available from: URL: http://apps.who.int/trialsearch/. Accessed November 21, 2013.
4. US National Institutes of Health. Clinical trials. Available from: URL: http://www.clinicaltrials.gov. Accessed November 21, 2013.
5. Hernandez-Martin A, Aranegui B, Escamez MJ, De Lucas R, Vicente A, Rodriguez-Diaz E, et al. Prevalence of dystrophic epidermolysis bullosa in Spain: a population-based study using the 3-source capture-recapture method. Evidence of a need for improvement in care. Actas Dermosifiliogr 2013;104:890-6.