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Table 5 Study description, recruitment outcomes reported by researchers and two derived performance metrics

From: Early experience with an opt-in research register - Scottish Health Research Register (SHARE): a multi-method evaluation of participant recruitment performance

Study name Region(s) Involvedc Study Inclusion & Exclusion Criteriac Target No. of Participants No. Received from SHARE No. Recruited through SHARE No. Recruited through Other Recruitment Means Percentage Provided and Recruited Percentage Fulfilled
Ω -f -f 20 30 20 0 66.7 100.0
V West Inclusion:
• Age: 20–39
Exclusion:
• Insulin dependent diabetes
• Diseases of the Nervous System 1
• Diseases of the Nervous System 2
• Congenital malformations of the nervous system
• Inability to give informed consent
• Mental retardation
• Alzheimer’s Disease
• Other degenerative diseases of the CNSd, not elsewhere specified
• Other degenerative disorders of nervous system in diseases classified elsewhere
• myotonic dystrophy or other muscular dystrophy
• family history of myotonic dystrophy and never tested
• Severe concurrent medical condition, e.g. cardiac failure or respiratory failure
• Contraindications to MRIe
• History of major head trauma with loss of consciousness greater than a few minutes or with significant medical sequelae
60 NAd 8 48 from clinical database of patients with myotonic dystrophy; 12 controls recruited from patients’ families /e 13.3
NAd -f -f 20 NAd 10 10 /e 50.0
R East Inclusion:
• Aged 60–85
• Fluent in English
• Able to read
• Reliable study partner/informant
Exclusion:
• Dementia or any degenerative brain disorder
• Brain disease
• On cholinesterase inhibitors and/or memantine
• Receiving daily medications with the potential to affect cognition such as sedatives, pain medications, or anticonvulsants within 30 days
• Familial autosomal dominant Alzheimer’s disease or other familial dementing diseases
• Uncontrolled or untreated thyroid problems
• Clinically significant vitamin B12 or folic acid deficiency
• Chromosome21trisomy
• History within the past 2 years or current diagnosis of significant psychiatric illness
• History within the last 5 years of a serious infectious disease affecting the brain or head trauma resulting in protracted loss of consciousness
• Contraindications for MRI
• Major surgery, requiring general anaesthesia within 8 weeks or has not recovered
• Exposure to ionizing radiation
• Learning disability
• Currently participating in any interventional studies
• Currently participating in non-interventional study that involves exposure to radiation or neuropsychological testing
• History within the last 5 years of any type of cancer
• Currently on regular Vitamin B injections
• Currently taking anti-seizure medications
• Currently taking co-codamol or dihydrocodeine
• Currently taking opioids
• Currently taking benzodiazepines
• Stroke
• Blindness
• Deafness or significant hearing impairment
• Seizures
250 650 152 375 23.4 60.8
E Southeast Inclusion:
• Age: 40–90
• Healthy
Exclusion:
• Diseases of eye and adnexa
• Inflammatory diseases of the central nervous system
• Systemic atrophies primarily affecting the central nervous system
• Extrapyramidal and movement disorders
• Other degenerative diseases of the nervous system
• Demyelinating diseases of the central nervous system
• Vascular syndromes of brain in cerebrovascular diseases
• Cerebral palsy and other paralytic syndromes
Stroke, not specified as haemorrhage or infarction
150 156 84 3 friends of people who had agreed to help during previous study 53.8 56.0
Y West and Southeast Inclusion:
• Diagnosis of F20.0, F20.1, F20.2, F20.3, F20.5, F20.9
• 25–55 years of age
• Body Mass Index (BMI) of 18 to 30 kg/m2
• A total body weight 50–100 kg
• Stable Antipsychotic medication for 1 month prior to visit 1
Exclusion:
• An existing neurological disorder
• Metal implants in body parts
• Pregnancy
• Psychiatric hospitalization over 6 months before visit 1
• Change of medication ≤1 month prior to visit 1
• Patients who are currently taking clozapine
• Current substance abuse, including cannabis
30 30–50 0 2 0 0
B Southeast Inclusion:
• Female
• Age: 18–50
• Complaint of HMBb
• Prescription for tranexamic acid or mefenamic acid
Exclusion:
• Cancer
• Severe Coagulation disorder
• Diabetes
• Hysterectomy
108 28 6 85 through NHS Menstrual Problem;
38 through GP letter by SPCRNa or leaflet given by GP; 20 through poster in clinical area, NHS/University staff website; 27 from Facebook adverts
21.4 5.6
NAd /e /e 350 NAd NAd NAd /e /e
I Southeast Exclusion:
• Age: ≥18 years old
• men or post-menopausal women (women with no periods for at least 12 months or having a surgical menopause)
• Hypertension
Exclusion:
• Ischaemic heart disease
• Cardiac failure
• Cerebrovascular disease
• Liver impairment disease
• CKD stage 3–5
• Overdose or suicidal ideation
• Weight less than 55 kg
• Chronic pain requiring treatment
• with a known allergy to paracetamol
• concomitant use of NSAIDs, oral anticoagulants or corticosteroids
110 37 7 100 through SPCRN;
97 through ABPMb clinics
18.9 6.4
Σ -f -f 12 92 10 13 10.9 83.0
Φ -f -f 100 0 0 103 0 0
M Southeast Inclusion:
• 65 years old or older
• Residents of Edinburgh or surrounding areas (including Lothians)
Exclusion:
• Have a history of dementia
• Stroke
• Other neurological disorders
• Traumatic brain injury
• Major psychiatric disorders
300 NAd NAd NAd /e /e
  1. aScottish Primary Care Research Network
  2. bAmbulatory blood pressure monitoring
  3. cdata come from study records held by SHARE, not from the survey responses
  4. dmissing, not provided by respondents
  5. ecannot be calculated due to missing data
  6. fcannot be retrieved because the study name reported by researchers is unidentifiable