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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